It can't be easy on my boys, being raised by a Geek. I can't help myself. I'm a reader, a thinker, and a researcher.
I had developed some strong ideas about television and parenting, before I became a parent. The plan was simple: More Books, Less TV. If the tv was going to be on, it would only be PBS and documentaries. No trash tv, no questionable values. No need to fill our brains with something that wasn't educational or purposeful. It sure was easy to be an authority on parenting... when I didn't have children!
Looking at the big picture, some of my righteous pre-parenting goals have been met. Reading does happen in our house, most days. Our home library is an eclectic mix of children's classics, historical biographies, research and educational volumes. We don't have cable tv, and thankfully have never watched a single "reality" show. (I still maintain that our lives are as much 'reality' as I can handle).
Yet, my sons, with their needs and learning styles, have changed my perspective on tv viewing for children. With great humility, I admit my oldest (born overseas and not my son until age 3-1/2) learned a lot of English from watching 'Yan Can Cook.' Props also go to The Weather Channel, for helping me teach geography, math, and social studies to both boys. My son still has a framed, autographed picture from Dr. Steve Lyons on his wall, and the "Tropical Update" remains must-see viewing on the internet. As the boys have gotten older, I've allowed them to watch NCIS and Dr. Who, but that was the extent of our 'fluff' tv-watching.
But, there is something I must confess. I watch junk tv comedy (love my Golden Girls dvds) when the kids aren't around. On top of that, I've developed relationships with two very different men. At first, I was able to hide these gentlemen from my children. But both men make me laugh and forget my troubles. I escape with them when I am tired and need a dose of humor. One day I turned on junk tv while the boys were home. They were in their rooms, they weren't paying any attention, I was tired....
And as I was watching an episode of Frasier, the boys heard me laugh. They came out to the living room to investigate and ended up sitting with me through the episode. And I noticed something. My oldest son, who is very high functioning and diagnosed with Autism, looked at me on a couple occasions and said "What does that mean?" I realized, the double entendre's and awkward social situations on the show were teaching my son Social Skills, better than any lecture from me. And thus the boys met those two special men of mine, and we began a journey through (almost*) every episode of Frasier, and then Bernie Mac.
The dialogue that's been created in our home has been fantastic. "Why did Frasier say that?" ... "Is his Dad upset?" .... "Was that the right thing to do?" .... "Why did the children do that?" .... "Is that the right way to react?" Yes, it takes us longer than most people to get through the episodes, and my youngest son patiently waits while the oldest figures things out. But he is learning, and having fun while he learns.
I watch my oldest with interest during these episodes. I see where we need work, and also how far he's come. There was a time when he could not identify idioms. Now, when an unfamiliar figure-of-speech is used, he will turn to me and ask, "What does that mean?" Sometimes he will seek reassurance from me, "That's funny, isn't it?" ...
And once again, I am amazed at what God has brought forth, for the opportunity for my son to learn, for the bonding that comes with laughter, for the family time, and for the growth. And I am humbled, because the entire process came out of something I had considered off-limits.
As for learning social skills from tv shows, an article from Psychology Today states, "viewers often empathize with the characters or at the least think about
what they would do if they were faced with similar situations. Constant
viewing of these shows provides the audiences with opportunities to
broaden and enrich their social toolbox and to think about some of their
own issues." **
It's tough to let go of lofty ideas, and hard for parents to admit when they're wrong. I could've snapped off the tv as soon as the boys came into the living room that day. But we would've missed fantastic social skills teaching and family time. My vision and hopes for the boys haven't changed. I still use documentaries to reinforce science and history. Books are still prized possessions. God is our Anchor. Reality tv is still off limits. I'm still a Geek.
Our existence is nothing like 'The Brady Bunch' or 'Father Knows Best,' but if I am to be honest and give due credit, there are several folks from TV Land who've helped me along the way. My pre-parenting self might cringe, but I heartily say "thank you" to Elmo, Yan, Kipper, Thomas the Tank Engine, Franklin, Arthur, Bill Nye, The Magic School Bus, Mr. Rogers, Schoolhouse Rock, Andy Griffith, Reading Rainbow, and... Frasier & Bernie Mac. You have all helped me raise my sons.
*You should know by now they aren't going to watch every episode...not all of it's suitable viewing for children.
**http://www.psychologytoday.com/blog/communication-central/200908/can-tv-increase-social-skills
Copyright
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Monday, December 30, 2013
Sunday, September 29, 2013
Just in case anyone asks
Years have a way of flying by...
Yesterday, I stood on the sidelines of a football field and watched my two sons perform in an award-winning marching band program.
As I looked at their handsome faces, I saw disciplined concentration, focusing solely on their performance.
As I watched the band move across the field, I saw my sons balance on tip-toe, perform ballet moves, twist and turn, march backwards, and reverse directions in split-seconds.
For the duration of their presentation, I watched them hold instruments steady in an upright, level position for 10 long minutes as they entered the field, performed, and exited.
And the whole time, I thought to myself... wasn't it yesterday they were babies?
I suppose you could say, I saw the same things every parent saw: Children who are growing up, working towards a cause, performing as a team.
But for me, each and every single performance, each practice, each bus ride, each time my children are included in an activity, I also see God's miracles at work.
I stand there and watch my sons, and in the back of my mind, I see -- can't help but see -- two young boys who had so much against them. I see the young 3 year old, running through the apartment, babbling in some mix of Romanian and English, smiling at me as he emptied the Pampers box and laid his diapers out in designs on the carpet. I see the 3 year old who couldn't distinguish right from left, who had limited upper body strength (because he never crawled), and who had only known hunger and survival, and who was kicked out of preschool because of his energy level. And then I see him surrounded by peers who support him, who have helped him bring out his best efforts. And I see him marching proudly with that heavy barritone, blowing for all he's worth. And I see God.
I look at my tall, freshman son, playing his clarinet, marching on tip-toe, leaning forward and back. I watch his fingers fly across those keys as he works through a trilly passage. I am so proud, and thankful, because I also see a 17 month old baby who could not stand the feel of water on his skin, who screamed like a banshee when I tried to bathe him.(He had never had a bath). I see a boy who could not walk or run without falling. I see a child who did not speak. And I think of an Occupational Therapist who gently said, "You know he's autistic, too?"
These images flash in front of me as I wait for the performance to start. And then I push those memories to the side, and I watch my sons on the field... and I see miracles, and I am greatly humbled.
It is not for us to know God's purpose or His plan. I struggled with infertility for countless years. And God plucked two boys out of orphanages on the other side of the globe and matched them with this crazy old woman. Why? I can not say. But if we are able to glorify God and be a testimony to His glory and good works, than that is more than enough for me.
The next time someone asks you, "Have you seen God at work in your life today?" please share your miracles! If I am asked, I will gaze with love at two teenage boys, and tell you, "I see Him at work every single day."
Yesterday, I stood on the sidelines of a football field and watched my two sons perform in an award-winning marching band program.
As I looked at their handsome faces, I saw disciplined concentration, focusing solely on their performance.
As I watched the band move across the field, I saw my sons balance on tip-toe, perform ballet moves, twist and turn, march backwards, and reverse directions in split-seconds.
For the duration of their presentation, I watched them hold instruments steady in an upright, level position for 10 long minutes as they entered the field, performed, and exited.
And the whole time, I thought to myself... wasn't it yesterday they were babies?
I suppose you could say, I saw the same things every parent saw: Children who are growing up, working towards a cause, performing as a team.
But for me, each and every single performance, each practice, each bus ride, each time my children are included in an activity, I also see God's miracles at work.
I stand there and watch my sons, and in the back of my mind, I see -- can't help but see -- two young boys who had so much against them. I see the young 3 year old, running through the apartment, babbling in some mix of Romanian and English, smiling at me as he emptied the Pampers box and laid his diapers out in designs on the carpet. I see the 3 year old who couldn't distinguish right from left, who had limited upper body strength (because he never crawled), and who had only known hunger and survival, and who was kicked out of preschool because of his energy level. And then I see him surrounded by peers who support him, who have helped him bring out his best efforts. And I see him marching proudly with that heavy barritone, blowing for all he's worth. And I see God.
I look at my tall, freshman son, playing his clarinet, marching on tip-toe, leaning forward and back. I watch his fingers fly across those keys as he works through a trilly passage. I am so proud, and thankful, because I also see a 17 month old baby who could not stand the feel of water on his skin, who screamed like a banshee when I tried to bathe him.(He had never had a bath). I see a boy who could not walk or run without falling. I see a child who did not speak. And I think of an Occupational Therapist who gently said, "You know he's autistic, too?"
These images flash in front of me as I wait for the performance to start. And then I push those memories to the side, and I watch my sons on the field... and I see miracles, and I am greatly humbled.
It is not for us to know God's purpose or His plan. I struggled with infertility for countless years. And God plucked two boys out of orphanages on the other side of the globe and matched them with this crazy old woman. Why? I can not say. But if we are able to glorify God and be a testimony to His glory and good works, than that is more than enough for me.
The next time someone asks you, "Have you seen God at work in your life today?" please share your miracles! If I am asked, I will gaze with love at two teenage boys, and tell you, "I see Him at work every single day."
Thursday, September 12, 2013
May the Circle Be Unbroken...
Driving to school a few days ago, the conversation was a mix of the usual:
-Don't forget to turn in your assignments.
-Grandma will be picking you up, don't make her wait.
-Did you comb your hair?
... interspersed with school and band updates from the back seat crowd.
Then, I heard my oldest say, "Well, <student> got in trouble for losing his music. Like I do, sometimes."(1)
We were sitting at a red light and I turned slightly to look at my son. Referring to the student, I said, "He is a very nice young man. You know he is autistic, like you?"
My oldest son's eyes met mine for a brief minute. The light changed, we moved on, but the conversation continued.
As I drove down the road, I continued, "I got to know him a little bit at band camp. You know he's hard of hearing, too? Actually, I don't know if it's auditory processing or deafness... He is very polite and really is trying hard." Both of my sons attested to the young freshman's earnest efforts, and good attitude.
I then asked my oldest son, "Are you helping him, the way the upperclassmen have helped you? Are you looking out for him the way others have looked out for you? You understand... Leaders are advocates, Leaders help others learn how to help themselves. You're growing up, you need to be as positive in this child's life as others have been in yours."
From the backseat, there is a moment of quiet, then "I'm going to talk to my friends who are section leaders. We can help him. I'm going to talk to the band director, too."
As I smiled to myself, I asked "Well, what are you going to say? You can't just walk up, point at someone, and be insensitive. You must find the right way to say things, help them keep their pride, but achieve goals, too. Let's have a plan."
And so, we practiced social skills ...
-When talking to the upperclassmen and section leaders, to be discrete, quiet, and to choose the appropriate students who will work with this student.
-When approaching the Band Director, to start delicately, with "Excuse me, Sir" and "I thank you and respect you" before broaching any concerns about the needs of this particular student.
Later that night, I asked my son how his efforts were received. "Well, mom, some of the other kids are going to work with him. I'll look out for him, too. And <Mr. Band Director> thanked me for coming to him and telling him my concerns. He said he knew he was autistic and is going to hold him to the same high standards he holds me."
I told my son I was proud of him, of how he conducted himself, and how he stood up for someone who needed help. I reminded him of his goal to be section leader, I reminded him, "This is how a true leader operates. They build their team, then they achieve greater goals." I reminded him, "Think about the upperclassmen and students who look out for you, teach you, and help you."
He responded by saying "Yeah" and telling me he needed to get back to his minecraft game, and that he loved me. (He got it, but he was done).
Fast forward to last night. I was at work, and Grandma was on the parenting scene. She sent me a rather lengthy text (no easy feat for Grandma), telling me how a compassionate, caring Senior band student had stayed after school with my oldest son. For almost an hour, they had worked on my son's marching routine.
You see, while my son is blessed with the ability to quickly memorize music, coordination of hand and feet movement is much more difficult for him. This is because of challenges with "crossing the midline" or "cross-lateral motion," often experienced by persons who are Autistic. (2)
Here at our house, this is a skill we've been working on since my oldest son's diagnosis, almost 10 years ago. I would use masking tape and create figure 8's on the garage floor - and walk those 8's with both of my sons. We would play a foot-hand/sock-matching game, we did grapevine walks, and crab walks... and so much more. And for all that effort, the boys have made remarkable progress. But some challenges still remain. We will keep working, keep praying, and keep moving forward.
And so, I'm thinking about a Senior student with a kind heart. This same Senior (and several other beloved band members / upperclassmen) have been looking out for my son since he started marching band last year. They have been patient - they have been compassionate - they have helped mold my son into a fine member of the marching band. I'm thinking about the parents of these students... what an amazing job they've done in raising children who are making changes in this world - at young ages. They will go out and do amazing things, of this I'm sure. And they are teaching those around them to build one another up, not tear them down. We should all behave in such a grand manner.
.... May this circle be unbroken!
(1) To learn more about Executive Functioning and Organizational Skills, click here: http://www.ncld.org/types-learning-disabilities/executive-function-disorders/organization-crucial-executive-skill-child-ld
(2) To learn more about Crossing the Midline / Cross-Lateral Motion, click here: http://nspt4kids.com/parenting/help-your-child-develop-the-crossing-the-midline-skill/
-Don't forget to turn in your assignments.
-Grandma will be picking you up, don't make her wait.
-Did you comb your hair?
... interspersed with school and band updates from the back seat crowd.
Then, I heard my oldest say, "Well, <student> got in trouble for losing his music. Like I do, sometimes."(1)
We were sitting at a red light and I turned slightly to look at my son. Referring to the student, I said, "He is a very nice young man. You know he is autistic, like you?"
My oldest son's eyes met mine for a brief minute. The light changed, we moved on, but the conversation continued.
As I drove down the road, I continued, "I got to know him a little bit at band camp. You know he's hard of hearing, too? Actually, I don't know if it's auditory processing or deafness... He is very polite and really is trying hard." Both of my sons attested to the young freshman's earnest efforts, and good attitude.
I then asked my oldest son, "Are you helping him, the way the upperclassmen have helped you? Are you looking out for him the way others have looked out for you? You understand... Leaders are advocates, Leaders help others learn how to help themselves. You're growing up, you need to be as positive in this child's life as others have been in yours."
From the backseat, there is a moment of quiet, then "I'm going to talk to my friends who are section leaders. We can help him. I'm going to talk to the band director, too."
As I smiled to myself, I asked "Well, what are you going to say? You can't just walk up, point at someone, and be insensitive. You must find the right way to say things, help them keep their pride, but achieve goals, too. Let's have a plan."
And so, we practiced social skills ...
-When talking to the upperclassmen and section leaders, to be discrete, quiet, and to choose the appropriate students who will work with this student.
-When approaching the Band Director, to start delicately, with "Excuse me, Sir" and "I thank you and respect you" before broaching any concerns about the needs of this particular student.
Later that night, I asked my son how his efforts were received. "Well, mom, some of the other kids are going to work with him. I'll look out for him, too. And <Mr. Band Director> thanked me for coming to him and telling him my concerns. He said he knew he was autistic and is going to hold him to the same high standards he holds me."
I told my son I was proud of him, of how he conducted himself, and how he stood up for someone who needed help. I reminded him of his goal to be section leader, I reminded him, "This is how a true leader operates. They build their team, then they achieve greater goals." I reminded him, "Think about the upperclassmen and students who look out for you, teach you, and help you."
He responded by saying "Yeah" and telling me he needed to get back to his minecraft game, and that he loved me. (He got it, but he was done).
Fast forward to last night. I was at work, and Grandma was on the parenting scene. She sent me a rather lengthy text (no easy feat for Grandma), telling me how a compassionate, caring Senior band student had stayed after school with my oldest son. For almost an hour, they had worked on my son's marching routine.
You see, while my son is blessed with the ability to quickly memorize music, coordination of hand and feet movement is much more difficult for him. This is because of challenges with "crossing the midline" or "cross-lateral motion," often experienced by persons who are Autistic. (2)
Here at our house, this is a skill we've been working on since my oldest son's diagnosis, almost 10 years ago. I would use masking tape and create figure 8's on the garage floor - and walk those 8's with both of my sons. We would play a foot-hand/sock-matching game, we did grapevine walks, and crab walks... and so much more. And for all that effort, the boys have made remarkable progress. But some challenges still remain. We will keep working, keep praying, and keep moving forward.
And so, I'm thinking about a Senior student with a kind heart. This same Senior (and several other beloved band members / upperclassmen) have been looking out for my son since he started marching band last year. They have been patient - they have been compassionate - they have helped mold my son into a fine member of the marching band. I'm thinking about the parents of these students... what an amazing job they've done in raising children who are making changes in this world - at young ages. They will go out and do amazing things, of this I'm sure. And they are teaching those around them to build one another up, not tear them down. We should all behave in such a grand manner.
.... May this circle be unbroken!
(1) To learn more about Executive Functioning and Organizational Skills, click here: http://www.ncld.org/types-learning-disabilities/executive-function-disorders/organization-crucial-executive-skill-child-ld
(2) To learn more about Crossing the Midline / Cross-Lateral Motion, click here: http://nspt4kids.com/parenting/help-your-child-develop-the-crossing-the-midline-skill/
Monday, August 5, 2013
Through his eyes
Back and forth he walked.
Every so often, he would sit down, but was back on his feet in moments.
Back and forth, up, down. Making random comments as he passed.
I was exhausted. I had nearly cancelled our weekend because I was too tired to face the task of packing. Sharp, chastising words were almost out of mouth, but I stopped as I looked at his eyes.
He was sitting across from me, looking right at me, meeting my gaze. He needed me to understand.
I waited.
I waited.
He said, "Mom, this isn't home."
And there it was, staring at me: Autism.
As my son has matured, the days of constant and intense autism vigilance have lessened. Sometimes we go weeks without facing Autism. But it still lurks in the shadows.
So as my son looked me in the eye, searching for reassurance, he said, "This isn't home. My things aren't here."
And I looked him right in the eye, took a deep breath and said, "I love you. You are safe. But we are not going home. You are going to spend a lifetime making transitions, and this is one of them."
As I said the words, I prayed them, too. "You will go to college. You will have a career. You will travel with your wife and family. And you will be able to survive it all and sometimes have fun, too."
I'm not sure he believed me, but he seemed reassured. He settled down and enjoyed the weekend. New experiences (transitions and surroundings) are not easy for autistic persons, but we had a good time at the lake. Yes, there were compromises along the way, but he (and his brother) survived and had fun!
As for me? Well, I'm not going to forget looking into those eyes. It's taken years of effort to get this young man to make consistent eye contact. But he can do it. He did do it. And the same boy who (years ago) could not understand what "hunger" was, who could not understand the basic signals of his body, sat down and talked to me and tried to tell me what was going on in his world.
I'm always amazed how God works in our lives. I thought my weekend prayers were simply going to be of thanksgiving for good friends, and a blessed break from the demands of the world. In the end, I was thanking God for so much more: for the strides made over the years, for the reminder of work yet to be done, and for giving hope for the future... to both of us.
I'm always amazed how God works in our lives. I thought my weekend prayers were simply going to be of thanksgiving for good friends, and a blessed break from the demands of the world. In the end, I was thanking God for so much more: for the strides made over the years, for the reminder of work yet to be done, and for giving hope for the future... to both of us.
Thursday, June 20, 2013
A Sign of the Times
- Take medicine.
Check out: http://www.handsinautism.org/pdf/How_To_Visual_Schedules.pdf if you'd like more information on Visual Schedules.
- Drink Rehydrate.
- Wear lanyard/key.
- Music & Instrument.
Those words are being printed on a small, bright sheet of paper. Then the paper will be taped on the wall at eye level in my son's dorm room when he attends band camp next week.
Whoa! Mom's a bit overprotective, huh? Maybe a bit extreme? No... Mom's making sure she does everything possible for her autistic son to have a successful first trip to away-camp.
Signs, Signs, Everywhere there's signs...
In our house, as in many homes with special needs children, signs help us learn a new behavior. Signs (and visual or written schedules) can be a great way to help my son learn sequential processing.
There's the Morning Routine sign hanging in the boys' bathroom. It's quite the conversation piece for visitors!
Sometimes signs are reminders.
On the fridge, a memory from elementary years still hangs: "No picking or tearing of notebooks or clothing." That sign was on both his desk and his binder for a while.
Sometimes signs have a deeper message.
There's a Creed that hangs by my son's bed. This is about positive thinking. I created it in a fit of exasperation. Far too often, my son's demeanor was negative, like a grumpy old man. One day I decided: We will learn a new way to think. (Even if it was simply memorization, I knew the words would eventually seep into his spirit). So we say his creed with our prayers.
On the fridge, a memory from elementary years still hangs: "No picking or tearing of notebooks or clothing." That sign was on both his desk and his binder for a while.
Sometimes signs have a deeper message.
There's a Creed that hangs by my son's bed. This is about positive thinking. I created it in a fit of exasperation. Far too often, my son's demeanor was negative, like a grumpy old man. One day I decided: We will learn a new way to think. (Even if it was simply memorization, I knew the words would eventually seep into his spirit). So we say his creed with our prayers.
Did I want to hang these signs? No.
Do I think they add a stylish touch to our decor? No.
Do I think they add a stylish touch to our decor? No.
Will I hang a sign if I think it will help my son navigate successfully through this life? You better believe it!
Every day, my son makes great strides in his world. He's come a long way over the years. It's my hope he won't need signs and schedules throughout his house when he matures. (Barring some sort of art-deco obsession with signs).
With prayer, practice, and God's grace, he will be ready to face the world.
I'm sure of it.
I'm sure of it.
I've seen the signs.
Check out: http://www.handsinautism.org/pdf/How_To_Visual_Schedules.pdf if you'd like more information on Visual Schedules.
Tuesday, June 18, 2013
Being a Man
He was 12 years old and in 6th grade... from September 2009
As I pulled out of the hospital parking lot, the teary voice
coming through my cell phone said, "Mom, I had silent lunch today. I
couldn't sit with my friends. The teacher warned me to stop talking at
least 5 times but I couldn't stop, so I had silent lunch."
I
still had 45 minutes of commute to clear my head from work, and needed
time to think about my response. My mind was going in numerous
directions: I was thrilled my Aspie son has a group of band buddies (he
has friends!!!) to sit with at lunch. I was glad to learn the teacher's
are being understanding yet not letting him get away with inappropriate
behavior in class. And I was sad my son was upset yet proud of him for
telling me what's going on in his life. All I said at that time was, "I
love you honey, thank you for telling me what's going on. We'll talk
about this when I get home."
After I got home and changed clothes
I sat down with Robert. As he snuggled next to me, a thought crossed my
mind: There won't be many more times he'll want to snuggle with me as
he grows up... and I already miss the feel of him in my arms.
And
thus came the inspiration for my answer. I waited while Robert relayed
the days events to me then I asked him, "You know how you tell me you're
ready to be grown up? Ready to make your own decisions? Ready to make
the rules?" He nodded yes.
And I asked him, "You know how I tell
you it's not time for you to make the rules? That you're still a kid and
not a man yet?" He nodded yes.
I said, "Well let's talk about
what a righteous man would do. A righteous man will face his challenges
head-on, he will admit his mistakes, face the consequences of his
actions, then move on and strive to do better. Can you do that?"
He quietly said, "Yes Mom, I can." He didn't try to argue with me, didn't try to tell me he was the victim, didn't sass me.
I think he took a small step towards being a man.
Thursday, May 23, 2013
Roars and Whimpers
This morning, Autism kept rearing it's head.
Not in a bad way, just a continual way.
En route to the doctor's office, he asked me an awkward social question. It was related to women who were walking along the downtown streets. I responded in an exasperated manner, "Why do you keep asking me about this? What is your fascination?" In an equally exasperated fashion he said, "Mom, it's not about sex! I wonder about the diseases. Why would anyone do that to themselves?"
As I drove along, we had a long discussion, I thought back to a training I'd attended a few years ago. At it, I learned repetitive comments about negative events or situations are not always simply an "obsession." In the words of one of the adult autistic presenters: "Repeated negative comments and questions help me get rid of bad or sad things in my head. If I talk about it, I don't have to keep thinking about it." Then I thought about the repetitive questions. I realized I have to teach him more about choices -- and how some people feel they have none. I have to help him see beyond his black and white world and accept the grey areas. And I need to help him empathize, not judge. We will work on this, I will work to help him understand.
He was antsy at the doctor's office, despite heavy work this morning. He couldn't stop talking. He tried, I could see his effort, but it was as if a switch has been flipped to ON. When we got home, he told me he needed to use the restroom. And it clicked. I thought back to the sensory, to the Occupational Therapy. Sometimes when the biological need to use the bathroom is great, he has trouble processing the message his body is sending to his brain, and his behaviors increase. It had been a while so it caught me off guard. I hadn't thought to ask him if he needed to use the restroom. I should've asked, should've thought of it... I will work on this, work to remember.
During the doctor's visit, one of his repetitive behaviors was addressed, and ideas discussed. It appears he has caused some damage to his skin. It can be cured, over time, but the behavior has to be addressed as well. We discussed ideas, and the doctor backed me up, even talked at length while making Robert look her in the eye. Her talk made a difference, she got through to Robert.
When she turned and looked at me, she said, "You're doing a great job." I thought I was going to cry. I know God has me. He is my rock and my hope. But I am human, and I get tired, and sometimes I feel I can not take this disease called Autism even one minute longer. But that's just emotion. We can take it on, we can tame it. At the very least, we will work on it!
I think back thirteen years. In my hopes, fantasies, prayers -- my sons were the strong, articulate young men of today. But back then, I didn't know if those dreams would come true. I don't know if other dreams will come true. What I do know: through God's abundant grace and our hard work -- we are taming Autism one day at a time. Ever so slowly, we are backing it into a corner. Sometimes it whimpers. Every great while it roars.
But, we will work on it
... And we will move forward!
Not in a bad way, just a continual way.
En route to the doctor's office, he asked me an awkward social question. It was related to women who were walking along the downtown streets. I responded in an exasperated manner, "Why do you keep asking me about this? What is your fascination?" In an equally exasperated fashion he said, "Mom, it's not about sex! I wonder about the diseases. Why would anyone do that to themselves?"
As I drove along, we had a long discussion, I thought back to a training I'd attended a few years ago. At it, I learned repetitive comments about negative events or situations are not always simply an "obsession." In the words of one of the adult autistic presenters: "Repeated negative comments and questions help me get rid of bad or sad things in my head. If I talk about it, I don't have to keep thinking about it." Then I thought about the repetitive questions. I realized I have to teach him more about choices -- and how some people feel they have none. I have to help him see beyond his black and white world and accept the grey areas. And I need to help him empathize, not judge. We will work on this, I will work to help him understand.
He was antsy at the doctor's office, despite heavy work this morning. He couldn't stop talking. He tried, I could see his effort, but it was as if a switch has been flipped to ON. When we got home, he told me he needed to use the restroom. And it clicked. I thought back to the sensory, to the Occupational Therapy. Sometimes when the biological need to use the bathroom is great, he has trouble processing the message his body is sending to his brain, and his behaviors increase. It had been a while so it caught me off guard. I hadn't thought to ask him if he needed to use the restroom. I should've asked, should've thought of it... I will work on this, work to remember.
During the doctor's visit, one of his repetitive behaviors was addressed, and ideas discussed. It appears he has caused some damage to his skin. It can be cured, over time, but the behavior has to be addressed as well. We discussed ideas, and the doctor backed me up, even talked at length while making Robert look her in the eye. Her talk made a difference, she got through to Robert.
When she turned and looked at me, she said, "You're doing a great job." I thought I was going to cry. I know God has me. He is my rock and my hope. But I am human, and I get tired, and sometimes I feel I can not take this disease called Autism even one minute longer. But that's just emotion. We can take it on, we can tame it. At the very least, we will work on it!
I think back thirteen years. In my hopes, fantasies, prayers -- my sons were the strong, articulate young men of today. But back then, I didn't know if those dreams would come true. I don't know if other dreams will come true. What I do know: through God's abundant grace and our hard work -- we are taming Autism one day at a time. Ever so slowly, we are backing it into a corner. Sometimes it whimpers. Every great while it roars.
But, we will work on it
... And we will move forward!
Talk to Me
This is an older note, written in March 2008. I share it every year as we head into Autism Awareness Month.
When
Robert first came into my life, I was prepared for all sorts of
possible delays and issues. I'd worked with children for years and had
educated myself on all the things that might happen based on his life in
an orphanage. I read books, went to seminars, and was ready for the big
things: Reactive Attachment Disorder, Oppositional Defiant Disorder,
Fetal Alcohol Syndrome. But none of those things manifested themselves.
I worked on bonding with him -- purposely regressing him so that I would feed him, then forcing eye contact while he was eating. I taught him his name (no one had ever taught him his name), and held him as often as possible. He learned English and how to give a "two-armed hug." And I started his musical education early with Mozart, jazz, and big band sounds to soothe his spirit and feed his brain.
At night, after I put him to bed, he would get up and hide behind his bedroom door, giggling, then he would dart out into the living room to see what was going on. He was 3-1/2 but didn't know any English, and almost no Romanian. Telling him to "go to bed" was meaningless, so I would lie down with him until he fell asleep.
And I talked to him. He would lie there and listen to me narrate the events of his day. I would talk about what he'd had for breakfast and what games we'd played. Every night I would tell him 3 or 4 parts of his body: "hair", "eyes", "nose"... and I would touch the corresponding location on his body and amazingly, the little fella would know these words the next morning! Every night I would teach him and each morning, he would tell me his new words. He absorbed language like a sponge! His acquisition was so fast I couldn't keep up with the list of words I was making to share with our social worker on her next follow-up visit.
Soon, I realized (and was so relieved) none of the disorders I listed above would be part of our journey with Robert. But there was something... I knew it wasn't exactly ADHD even though it sometimes looked like it.
Then a friend talked to me, and gently suggested that Robert's issues were neurological and fell under the Autism umbrella. My friend was right and the first diagnosis was Sensory Integration Disorder. Through years of Occupational Therapy in the clinical setting and at home with me, great strides were made, but there was something more... Again, I couldn't peg it, but there was something...
One day I was talking to a friend and she said, "Have you heard of Asperger's Syndrome?" I hadn't but I researched it quickly and Robert fit all the criteria. He is brilliant - a "little professor" as many of these children are, but he has deficits in social skills, language arts, and develops obsessions for certain objects.
You'd think that after all these years, after all the research, meetings, seminars, workshops, and networking with parents and professionals in this field that I wouldn't be surprised by anything.
But Friday morning [in 2008] I was in an IEP meeting at the school and we were reviewing a recent evaluation done on Robert. I am familiar with the test that was used. I am sure the numbers are right. And yet, what's been playing through my head the last couple days are the numbers 4 and 22.
My brilliant little boy has expressive communication skills that test out to an age equivalency of 22 years old. The little professor can build and describe an electromagnet for goodness sake, and he can tell you where your epiglottis is located, so no surprises there.
But because he does not understand all parts of speech, because he does not understand slang and social cues, his receptive communication skills are those of a 4 year old.
4 and 22.
These numbers haunt me.
With the proper therapies the incredible gap between these two numbers will grow smaller. But still they haunt me. What's the missing piece that explains this deficit and will help researchers find a cure and increase understanding?
That critical piece of the puzzle is Autism research and awareness. April 1 will be here soon and will mark the beginning of Autism Awareness Month.
If you know someone who's life is touched by Autism, keep in mind that they are dealing with a puzzle that as yet can't be solved. And if you think they need to talk to someone who understands, encourage them to get involved in a support group, or you can tell them to talk to me.
I worked on bonding with him -- purposely regressing him so that I would feed him, then forcing eye contact while he was eating. I taught him his name (no one had ever taught him his name), and held him as often as possible. He learned English and how to give a "two-armed hug." And I started his musical education early with Mozart, jazz, and big band sounds to soothe his spirit and feed his brain.
At night, after I put him to bed, he would get up and hide behind his bedroom door, giggling, then he would dart out into the living room to see what was going on. He was 3-1/2 but didn't know any English, and almost no Romanian. Telling him to "go to bed" was meaningless, so I would lie down with him until he fell asleep.
And I talked to him. He would lie there and listen to me narrate the events of his day. I would talk about what he'd had for breakfast and what games we'd played. Every night I would tell him 3 or 4 parts of his body: "hair", "eyes", "nose"... and I would touch the corresponding location on his body and amazingly, the little fella would know these words the next morning! Every night I would teach him and each morning, he would tell me his new words. He absorbed language like a sponge! His acquisition was so fast I couldn't keep up with the list of words I was making to share with our social worker on her next follow-up visit.
Soon, I realized (and was so relieved) none of the disorders I listed above would be part of our journey with Robert. But there was something... I knew it wasn't exactly ADHD even though it sometimes looked like it.
Then a friend talked to me, and gently suggested that Robert's issues were neurological and fell under the Autism umbrella. My friend was right and the first diagnosis was Sensory Integration Disorder. Through years of Occupational Therapy in the clinical setting and at home with me, great strides were made, but there was something more... Again, I couldn't peg it, but there was something...
One day I was talking to a friend and she said, "Have you heard of Asperger's Syndrome?" I hadn't but I researched it quickly and Robert fit all the criteria. He is brilliant - a "little professor" as many of these children are, but he has deficits in social skills, language arts, and develops obsessions for certain objects.
You'd think that after all these years, after all the research, meetings, seminars, workshops, and networking with parents and professionals in this field that I wouldn't be surprised by anything.
But Friday morning [in 2008] I was in an IEP meeting at the school and we were reviewing a recent evaluation done on Robert. I am familiar with the test that was used. I am sure the numbers are right. And yet, what's been playing through my head the last couple days are the numbers 4 and 22.
My brilliant little boy has expressive communication skills that test out to an age equivalency of 22 years old. The little professor can build and describe an electromagnet for goodness sake, and he can tell you where your epiglottis is located, so no surprises there.
But because he does not understand all parts of speech, because he does not understand slang and social cues, his receptive communication skills are those of a 4 year old.
4 and 22.
These numbers haunt me.
With the proper therapies the incredible gap between these two numbers will grow smaller. But still they haunt me. What's the missing piece that explains this deficit and will help researchers find a cure and increase understanding?
That critical piece of the puzzle is Autism research and awareness. April 1 will be here soon and will mark the beginning of Autism Awareness Month.
If you know someone who's life is touched by Autism, keep in mind that they are dealing with a puzzle that as yet can't be solved. And if you think they need to talk to someone who understands, encourage them to get involved in a support group, or you can tell them to talk to me.
Saturday, April 20, 2013
Life's a Dance
On the way to the band festival, Robert was full of excitement. He was
going to be a helper! Conversation went from band chatter to a very
solemn question about tonight's big event - his first school dance.
Yes, he's attending the Special Needs Prom at school tonight.
His question: "Do you think they'll have a waltz tonight? That's 1,2,3,4, isn't it?"
I told him they might play one but I really doubted it. I offered to help him with dance moves (he usually declines my offers) or watch some youtube videos.
He said, "No, I'll be ok."
Then he talked about seeing his friend, whom we'll call David, tonight. He and "David" have been buddies since 6th grade. "David" is a very tall young man, and as we know, Robert is not very tall. Together they look like Mutt & Jeff, but they've always looked out for each other. Robert would worry about David's grades, and David was a bit of protection for Robert.
Alas, this year, David has followed a different path at the high school and stays with the other students on the remediation hall, and Robert is advancing on a different path through school.
So, big happiness will come from their attending the dance together tonight. Robert told me, "David talked me into going to the prom."
...Fast forward to driving home after the festival.
Robert says, "Mom, I've got to be under my blanket for a while. It's a big day."
No problem, I'm thankful he recognizes his need to unwind. So, I turn on my computer and check messages.
I receive one from a friend who tells me: Robert has asked a young lady to the prom!
WHAT? I had no clue!
He has known this young lady a long time, and he knows she only likes him as a friend.
But still, he asked to the prom, YESTERDAY. And he never told me.
If it hadn't been for a dear friend's message, asking what the young lady should wear... I'd never have known!
This status update is long, so let me sum up and say:
I've cried many tears this afternoon.
Tears of sorrow for my son's social skills challenges.
Tears of thankfulness for friends who are kind and who love my son.
Tears as I think of those who are not so compassionate to my son.
Tears of gratefulness for a young lady's kind heart and christian love of a friend.
Tears of frustration because I didn't see this coming.
Tears of inadequacy because Robert said, "I didn't tell you because you're not a guy. We need a guy."
Tears of gratefulness -- for parents who are raising incredible young people.
Tears because there is still so much good in the world.
Tears because Kroger has corsages available at the last minute.
Tears because my son is growing up.
What a day.
I have to head to work and Grandma is coming over to pitch hit. She and Ryann will be taking pictures and keeping me updated.
Robert has learned he must always talk to Mom about these things, that he should have contacted the young lady's parents, that there are many things we should have done. He has had tears in his eyes. He didn't mean to cause a problem. He just wanted to go to the dance, and he wanted to ask his friend to go with him. He's still under his blanket.
I pray he has a good time tonight with his friends. I pray for many blessings for the young lady, and all the children attending the prom tonight. I pray Miss Clairol keeps making my shade of hair dye, because the grey continues to grow!
xoxo
Yes, he's attending the Special Needs Prom at school tonight.
His question: "Do you think they'll have a waltz tonight? That's 1,2,3,4, isn't it?"
I told him they might play one but I really doubted it. I offered to help him with dance moves (he usually declines my offers) or watch some youtube videos.
He said, "No, I'll be ok."
Then he talked about seeing his friend, whom we'll call David, tonight. He and "David" have been buddies since 6th grade. "David" is a very tall young man, and as we know, Robert is not very tall. Together they look like Mutt & Jeff, but they've always looked out for each other. Robert would worry about David's grades, and David was a bit of protection for Robert.
Alas, this year, David has followed a different path at the high school and stays with the other students on the remediation hall, and Robert is advancing on a different path through school.
So, big happiness will come from their attending the dance together tonight. Robert told me, "David talked me into going to the prom."
...Fast forward to driving home after the festival.
Robert says, "Mom, I've got to be under my blanket for a while. It's a big day."
No problem, I'm thankful he recognizes his need to unwind. So, I turn on my computer and check messages.
I receive one from a friend who tells me: Robert has asked a young lady to the prom!
WHAT? I had no clue!
He has known this young lady a long time, and he knows she only likes him as a friend.
But still, he asked to the prom, YESTERDAY. And he never told me.
If it hadn't been for a dear friend's message, asking what the young lady should wear... I'd never have known!
This status update is long, so let me sum up and say:
I've cried many tears this afternoon.
Tears of sorrow for my son's social skills challenges.
Tears of thankfulness for friends who are kind and who love my son.
Tears as I think of those who are not so compassionate to my son.
Tears of gratefulness for a young lady's kind heart and christian love of a friend.
Tears of frustration because I didn't see this coming.
Tears of inadequacy because Robert said, "I didn't tell you because you're not a guy. We need a guy."
Tears of gratefulness -- for parents who are raising incredible young people.
Tears because there is still so much good in the world.
Tears because Kroger has corsages available at the last minute.
Tears because my son is growing up.
What a day.
I have to head to work and Grandma is coming over to pitch hit. She and Ryann will be taking pictures and keeping me updated.
Robert has learned he must always talk to Mom about these things, that he should have contacted the young lady's parents, that there are many things we should have done. He has had tears in his eyes. He didn't mean to cause a problem. He just wanted to go to the dance, and he wanted to ask his friend to go with him. He's still under his blanket.
I pray he has a good time tonight with his friends. I pray for many blessings for the young lady, and all the children attending the prom tonight. I pray Miss Clairol keeps making my shade of hair dye, because the grey continues to grow!
xoxo
Monday, April 1, 2013
Ode to Autism
I remember when my oldest son was asked to leave our church's preschool. He wasn't bad, he just moved around too much and he couldn't focus on quiet time. He had difficulty following directions, and he needed to lay on things because the pressure on his body helped him concentrate. He was a distraction to the class and the teachers. He has ADHD in conjunction with Autism (not bad parenting) but he didn't get the official ADHD diagnosis til later.
I remember going grocery shopping when my youngest was little and how he screamed in the freezer section, and how he covered his ears. The hum of the freezer motor was too loud for his hearing senses to process. But I didn't learn about auditory processing til later.
I remember cruel remarks from people who saw my oldest son with a chew toy in his mouth when we went out in public. I knew how to provide for my child's needs, but I didn't learn how to stand up to rude stares and remarks til later.
I remember watching my youngest son try to run... And fall down every few steps. I remember when he became capable of walking barefoot, without the support of shoes. I watched his transformation through intense occupational therapy, and he learned to run, later.
I remember a life before Autism... I remember a time when I didn't know what autism was, when it was completely foreign to me.
But that was almost 15 years ago. I've learned a lot since then.
I've learned: My sons are capable of amazing things.
I've learned: My God is with me always as I raise these boys. He is my greatest resource!
I've learned: Rude people are simply rude. It's not personal. I still detest it, but I know they own their actions, and I don't have to let it take me down.
I've learned: More about Autism, Human Nature, and Special Education Law than I can describe here. It's become part of my every-day existence.
I've learned: I must rely on God's promises. I can not do this on my own.
I've learned: I must take care of myself so I can take care of my children.
I've learned: People are inherently good. Sometimes they just need to be inspired.
Communities around the globe are rallying today to create awareness of a cause which affects my life every single day of the year.
I remember a time when no one rallied for Autism awareness. I remember when no wore blue. I remember when no one had blue light bulbs on their houses. I remember when a puzzle piece was just part of a puzzle, not a symbol for a health epidemic.
I'm grateful for the awareness we have today! As people come to understand how autism affects lives, I pray this awareness helps fund autism research so we can reach the 1 in 50. And I pray the cure comes sooner, rather than later.
I remember going grocery shopping when my youngest was little and how he screamed in the freezer section, and how he covered his ears. The hum of the freezer motor was too loud for his hearing senses to process. But I didn't learn about auditory processing til later.
I remember cruel remarks from people who saw my oldest son with a chew toy in his mouth when we went out in public. I knew how to provide for my child's needs, but I didn't learn how to stand up to rude stares and remarks til later.
I remember watching my youngest son try to run... And fall down every few steps. I remember when he became capable of walking barefoot, without the support of shoes. I watched his transformation through intense occupational therapy, and he learned to run, later.
I remember a life before Autism... I remember a time when I didn't know what autism was, when it was completely foreign to me.
But that was almost 15 years ago. I've learned a lot since then.
I've learned: My sons are capable of amazing things.
I've learned: My God is with me always as I raise these boys. He is my greatest resource!
I've learned: Rude people are simply rude. It's not personal. I still detest it, but I know they own their actions, and I don't have to let it take me down.
I've learned: More about Autism, Human Nature, and Special Education Law than I can describe here. It's become part of my every-day existence.
I've learned: I must rely on God's promises. I can not do this on my own.
I've learned: I must take care of myself so I can take care of my children.
I've learned: People are inherently good. Sometimes they just need to be inspired.
Communities around the globe are rallying today to create awareness of a cause which affects my life every single day of the year.
I remember a time when no one rallied for Autism awareness. I remember when no wore blue. I remember when no one had blue light bulbs on their houses. I remember when a puzzle piece was just part of a puzzle, not a symbol for a health epidemic.
I'm grateful for the awareness we have today! As people come to understand how autism affects lives, I pray this awareness helps fund autism research so we can reach the 1 in 50. And I pray the cure comes sooner, rather than later.
Saturday, February 2, 2013
Why Can't We Be Friends?
Life and Time often conspire against us, causing memories to be blurred and events forgotten. But as I review Robert's paperwork and reorganize his file, events are remembered. Combine the memories with recent events and I want to offer some reflections on our Special Ed journey.
I homeschooled both boys in their early years. The reasons I chose homeschooling were varied: Merrimack (NH) didn't have public kindergarten, both boys had delays, homeschooling gave us freedom and more time for bonding, they'd been rejected for early intervention in WA state (which I now know was illegal)... and I wasn't ready to trust the school system with my children.
But through Special Olympics, I met a wonderful lady who oversaw the sped program at Reed's Ferry Elementary in New Hampshire. One day she said to me, "Please let me have a chance with your son." And things went well. Not perfect, I didn't know how to get speech for Robert... but the school system put both boys on IEP's and Robert had OT, PT, and accommodations. (Ryann had speech and OT but no longer needs an IEP although he still struggles with auditory sensitivity). Unfortunately, despite a decent school system, my marriage was finally disintegrating. And I moved home to Virginia.
Although the small town to which I fled offered many positives, my sons were now at the mercy of a school system that didn't care... Don't get me wrong, there were some that tried, and some who fought the brave fight... but I was one woman, fighting a political machine. I remember the first IEP meeting... they'd lined up a dozen folks in a small classroom and I guess I was meant to be intimidated. Four hours later I called my best friend and said, "I'm going to be a while"... and for the next two years I learned how to fight the good fight. I joined the Sped Advisory Committee for the county, I pulled in a research team from Richmond... and again, while there are those who tried to help, their best efforts could not give my son what he needed.
Most of you know how I ended up in DeSoto County, MS. Their reputed public school autism program and the woman who loves our children, brought me here. And even though there are bumps along the way, I still say... we have it GOOD in DeSoto County. Robert has Speech (after 3 other states denied him), OT, Social Skills group, transportation accomodations, sensory diet, and other accommodations. My children are blossoming... and we are blessed.
But recently, someone said to me, "I want my IEP meeting to be peaceful". And heck, I sure agree with that statement. I'd like everything to be peaceful. But it doesn't work that way. Sometimes you have to be bold, you have to project an image... to get your children what they need.
When we first got to MS, we had an IEP meeting prior to Robert's admission to school. I think folks listened but they didn't "get it"... perhaps they needed to meet Robert, perhaps they were overburdened (God bless our teachers who are so very overworked and underpaid), perhaps they weren't used to a parent who participated in their child's education process, perhaps.... I had to prove myself.
I'm not sure what the exact answer was, but as I go through the documents in Robert's file, I see an email written about me which was written right after I got here, dtd 1-29-08 and states in part "...in her response below that she has other concerns she feels aren't being acknowledged. From this point on, I will only communicate with her in person with someone else or by phone with someone present." No doubt this was written because I'd been a bit outspoken, been pushing for services.
But even then, my concerns weren't taken into account as they should, when Robert was hit in the face in school, his glasses broken, and I rushed to the school on Feb 4th... to find my baby hurt and upset. Granted, Robert had acted out in the bathroom (and from his perspective he got in big trouble with me) but there should've been safeguards in place prior to the incident. I had asked for them, but it wasn't until this incident, that they were quickly put in place.
And to the school's credit, the other child was suspended. Yet I was told, "this isn't the first time he's tried these attention getting devices", and my response was, "Why didn't you tell me?" I suppose school personnel get so tired of parents not caring, and are overwhelmed by all that goes on, that sometimes things fall through the cracks. But they shouldn't and now it's a line item in his IEP... I will be contacted!
And so, my first contacts with school personnel in MS didn't endear me to anyone. I was bold, passionate, outspoken, and had reached my limits with schools. I wasn't anyone's friend. But I'm cool with that... I have friends. What I was, however, was Robert's Mom.
And can you believe it? The following line item is now in Robert's IEP:
Robert's mother is extremely supportive of his education and maintains great communication with his teachers and support staff. She provides academic and behavior support at home and is concerned for Robert's best educational environment."
Bless them!
Along this journey, I've met several people who would be happy if I dropped off the face of the earth. Not my problem. I've also met people who work hard for our children every day. Even if they aren't my friends, I admire them and am so thankful they are part of my child's life. And I've made a few friends who I love dearly... and thank for their passion and devotion to our children.
My intended message? Don't give up, don't worry about making friends, don't worry about keeping the peace. There may be times where you are your child's only advocate. Learn how to get your message across professionally, always back your position with data, learn how to negotiate, and learn when to speak up when it's needed. And never, ever, underestimate the power of prayer and the promise that Right will Prevail!
I homeschooled both boys in their early years. The reasons I chose homeschooling were varied: Merrimack (NH) didn't have public kindergarten, both boys had delays, homeschooling gave us freedom and more time for bonding, they'd been rejected for early intervention in WA state (which I now know was illegal)... and I wasn't ready to trust the school system with my children.
But through Special Olympics, I met a wonderful lady who oversaw the sped program at Reed's Ferry Elementary in New Hampshire. One day she said to me, "Please let me have a chance with your son." And things went well. Not perfect, I didn't know how to get speech for Robert... but the school system put both boys on IEP's and Robert had OT, PT, and accommodations. (Ryann had speech and OT but no longer needs an IEP although he still struggles with auditory sensitivity). Unfortunately, despite a decent school system, my marriage was finally disintegrating. And I moved home to Virginia.
Although the small town to which I fled offered many positives, my sons were now at the mercy of a school system that didn't care... Don't get me wrong, there were some that tried, and some who fought the brave fight... but I was one woman, fighting a political machine. I remember the first IEP meeting... they'd lined up a dozen folks in a small classroom and I guess I was meant to be intimidated. Four hours later I called my best friend and said, "I'm going to be a while"... and for the next two years I learned how to fight the good fight. I joined the Sped Advisory Committee for the county, I pulled in a research team from Richmond... and again, while there are those who tried to help, their best efforts could not give my son what he needed.
Most of you know how I ended up in DeSoto County, MS. Their reputed public school autism program and the woman who loves our children, brought me here. And even though there are bumps along the way, I still say... we have it GOOD in DeSoto County. Robert has Speech (after 3 other states denied him), OT, Social Skills group, transportation accomodations, sensory diet, and other accommodations. My children are blossoming... and we are blessed.
But recently, someone said to me, "I want my IEP meeting to be peaceful". And heck, I sure agree with that statement. I'd like everything to be peaceful. But it doesn't work that way. Sometimes you have to be bold, you have to project an image... to get your children what they need.
When we first got to MS, we had an IEP meeting prior to Robert's admission to school. I think folks listened but they didn't "get it"... perhaps they needed to meet Robert, perhaps they were overburdened (God bless our teachers who are so very overworked and underpaid), perhaps they weren't used to a parent who participated in their child's education process, perhaps.... I had to prove myself.
I'm not sure what the exact answer was, but as I go through the documents in Robert's file, I see an email written about me which was written right after I got here, dtd 1-29-08 and states in part "...in her response below that she has other concerns she feels aren't being acknowledged. From this point on, I will only communicate with her in person with someone else or by phone with someone present." No doubt this was written because I'd been a bit outspoken, been pushing for services.
But even then, my concerns weren't taken into account as they should, when Robert was hit in the face in school, his glasses broken, and I rushed to the school on Feb 4th... to find my baby hurt and upset. Granted, Robert had acted out in the bathroom (and from his perspective he got in big trouble with me) but there should've been safeguards in place prior to the incident. I had asked for them, but it wasn't until this incident, that they were quickly put in place.
And to the school's credit, the other child was suspended. Yet I was told, "this isn't the first time he's tried these attention getting devices", and my response was, "Why didn't you tell me?" I suppose school personnel get so tired of parents not caring, and are overwhelmed by all that goes on, that sometimes things fall through the cracks. But they shouldn't and now it's a line item in his IEP... I will be contacted!
And so, my first contacts with school personnel in MS didn't endear me to anyone. I was bold, passionate, outspoken, and had reached my limits with schools. I wasn't anyone's friend. But I'm cool with that... I have friends. What I was, however, was Robert's Mom.
And can you believe it? The following line item is now in Robert's IEP:
Robert's mother is extremely supportive of his education and maintains great communication with his teachers and support staff. She provides academic and behavior support at home and is concerned for Robert's best educational environment."
Bless them!
Along this journey, I've met several people who would be happy if I dropped off the face of the earth. Not my problem. I've also met people who work hard for our children every day. Even if they aren't my friends, I admire them and am so thankful they are part of my child's life. And I've made a few friends who I love dearly... and thank for their passion and devotion to our children.
My intended message? Don't give up, don't worry about making friends, don't worry about keeping the peace. There may be times where you are your child's only advocate. Learn how to get your message across professionally, always back your position with data, learn how to negotiate, and learn when to speak up when it's needed. And never, ever, underestimate the power of prayer and the promise that Right will Prevail!
Sunday, January 13, 2013
Celebrate!
As the Miss America pageant took place tonight, the global autism community was cheering on Alexis Wineman, Miss Montana.
Alexis became one of the most popular contestants of the pageant. Not only was she named a finalist, she was also the youngest competitor at this year's pageant, winner of ABC's People's Choice award, and the first contestant in pageant history (to admit being) diagnosed with Autism, specifically PDD-NOS. (Pervasive Developmental Disorder-Not Otherwise Specified).
A miracle!
A vindication!
A winner!
A beauty!
Yet in all the excitement, my mind kept wandering to thoughts of her parents.
According to online articles, they were told their daughter was autistic 7 years ago, long before she ever entered a beauty pageant.
They knew something was different about their child.
They've heard the doctor's diagnosis.
They've had to hold to console their child after she was bullied.
They've had to endure melt-downs.
They've had to deal with school concerns.
They've had their parenting questioned.
They've had sleepless nights.
They've had to teach their child to exist in a non-Autistic world.
They're two parents doing the best they can for their family and their special needs child.
They aren't glossy or glamorous.
They've struggled.
They are "one of us"...
70 years ago, Alexis' parents would've been advised to put their autistic daughter in an institution. This evening, Alexis' parents saw their daughter in a tiara and the Miss America pageant!
I have a secret to tell you:
Tonight I celebrate Miss Montana, but I'm also celebrating her parents!
Sources:
http://www.abilitypath.org/love-laugh--live/family-fun/alexis-wineman-miss-montana-2012.html
http://www.missamerica.org/news/press-releases.aspx?id=625
http://www.people.com/people/article/0,,20664029,00.html
http://abcnews.go.com/blogs/entertainment/2013/01/alexis-wiseman-miss-montana-first-autistic-miss-america-contestant/
http://www.greatfallstribune.com/article/20130111/NEWS01/130111005/Miss-Montana-Alexis-Wineman-makes-history-first-Miss-America-contestant-autism
Thursday, January 10, 2013
Big Brother
Growing up, I longed for an older brother. In my dreams he would've been a protector and advisor. He'd have taken some of the burden off me (I'm the oldest child in my family), he'd have guided me through awkward social situations, helped me study, and eased some of life's challenges. Obviously, my dream could never be a reality.
Many decades later, I'm raising two sons. In the natural order of things, it would be safe to assume my 16 year old plays the role of Big Brother to my 13 year old.
But never assume anything, especially when considering a special needs family. My 16 year old is diagnosed autistic: a compilation of Asperger's Syndrome, Sensory Integration Disorder, ADHD, reading comprehension issues, and sparkling brilliance. He is a delight, but he has not been able to take on the traditional authoritative role reserved for a family's oldest child.
Instead, the role of Big Brother has fallen on my youngest son. He is the organized one, the Communicator, Mentor, and Coach. When I'm at work, he makes sure things are ok at home: dinner's in the microwave, chores are checked off each boys' list, alarm is on, showers taken. When my oldest misses social cues, his younger brother clues him; When my oldest "isn't sure" what someone said, my youngest chimes in; when my oldest leaves things scattered or needs an activity break, my youngest reminds him to be focused. It does not always work smoothly. There have been times when my eldest son says, "Why does he act like the big brother? I'm older." And times when my youngest is simply tired of shouldering the burden. (He has his own sensory issues, including Auditory Processing Disorder. Sometimes, one more noise, sound, or word is too much to tolerate).
So, it's not easy. Sometimes there is chaos and impatience. But it's not "bad" either. There is love and commitment. There are priceless bits of character development. Siblings of special children are often more compassionate, tolerant people.They are warriors and defenders, they develop thick skin, and excellent coping skills. They often champion life's underdogs, and they learn early that Disney lied: it's not all happily-ever-after, but it can be good.
However, our little family's dynamics were recently altered, rather quickly. My youngest has had reconstructive surgery of his right rib cage. For several months, he can not pull, push, or lift ANYthing. He must be careful not to fall, or to get jostled in a crowd. And he fatigues easily. As he recovers, he must fully rely on his older brother to cook dinner in the microwave, to carry clothes for him, to open the door for him, to carry his toys. Physical limitations are not easy for an independent 13 year old to accept. But in this mix of healing energy and angst, I also sense: Relief. From both of my sons.
For my youngest, some of the burden has been reduced. And my oldest now gets to take on the role of Big Brother. He must put down his coins and geckos and focus on the task at hand. He must protect, nurture, and care for his brother. It's time to take the next steps in maturity, to become the caretaker of himself and someone weaker than him. His egocentric universe is going to be under attack, and he may rebel a bit, but he will become a better person, and brother, in the process.
The next few months promise to be ones of healing and rest, they will also be ones of challenges and trade-offs. Possibilities abound and Hope carries us forward.
Many decades later, I'm raising two sons. In the natural order of things, it would be safe to assume my 16 year old plays the role of Big Brother to my 13 year old.
But never assume anything, especially when considering a special needs family. My 16 year old is diagnosed autistic: a compilation of Asperger's Syndrome, Sensory Integration Disorder, ADHD, reading comprehension issues, and sparkling brilliance. He is a delight, but he has not been able to take on the traditional authoritative role reserved for a family's oldest child.
Instead, the role of Big Brother has fallen on my youngest son. He is the organized one, the Communicator, Mentor, and Coach. When I'm at work, he makes sure things are ok at home: dinner's in the microwave, chores are checked off each boys' list, alarm is on, showers taken. When my oldest misses social cues, his younger brother clues him; When my oldest "isn't sure" what someone said, my youngest chimes in; when my oldest leaves things scattered or needs an activity break, my youngest reminds him to be focused. It does not always work smoothly. There have been times when my eldest son says, "Why does he act like the big brother? I'm older." And times when my youngest is simply tired of shouldering the burden. (He has his own sensory issues, including Auditory Processing Disorder. Sometimes, one more noise, sound, or word is too much to tolerate).
So, it's not easy. Sometimes there is chaos and impatience. But it's not "bad" either. There is love and commitment. There are priceless bits of character development. Siblings of special children are often more compassionate, tolerant people.They are warriors and defenders, they develop thick skin, and excellent coping skills. They often champion life's underdogs, and they learn early that Disney lied: it's not all happily-ever-after, but it can be good.
However, our little family's dynamics were recently altered, rather quickly. My youngest has had reconstructive surgery of his right rib cage. For several months, he can not pull, push, or lift ANYthing. He must be careful not to fall, or to get jostled in a crowd. And he fatigues easily. As he recovers, he must fully rely on his older brother to cook dinner in the microwave, to carry clothes for him, to open the door for him, to carry his toys. Physical limitations are not easy for an independent 13 year old to accept. But in this mix of healing energy and angst, I also sense: Relief. From both of my sons.
For my youngest, some of the burden has been reduced. And my oldest now gets to take on the role of Big Brother. He must put down his coins and geckos and focus on the task at hand. He must protect, nurture, and care for his brother. It's time to take the next steps in maturity, to become the caretaker of himself and someone weaker than him. His egocentric universe is going to be under attack, and he may rebel a bit, but he will become a better person, and brother, in the process.
The next few months promise to be ones of healing and rest, they will also be ones of challenges and trade-offs. Possibilities abound and Hope carries us forward.
Monday, September 10, 2012
It's a Dude Thing
I wish I knew how to be a man. Seriously.
No, I'm not thinking about a sex change operation or making an announcement about my gender. I like being a woman. It's how God made me, and after all these decades, seems to be working for me, last time I checked.
But I'm raising two teenage boys on my own. Their father isn't around and their Grandfather (my father) is deceased. While I might wish to meet a nice man, I'm in no hurry, and have no desire to date just anyone to have a man around the house.
So where does that leave us?
Oh yeah, I'm trying to learn to think like a man...
God gave me these boys to raise and he knew what I'd be up against, so He graciously gave the boys great role models in teachers, friends-of-the-family, and via activities. But there's no significant male influence in our home. So it's up to me.
I can teach them manners (so far neither one scratches themselves in public very often) and I can teach them morals, praying they're listening. But the dude stuff?
About a year ago I realized, I had to get with the program!
So, we tackle dude-type projects together. Google has become my friend. I research inexpensive do-it-yourself projects and we take them on. The boys have learned about weeding and have done some landscaping and gardening. This spring we plastered and painted the kitchen, and made a backsplash behind the kitchen sink. We work as a family and we work hard. Our results might not be up to Bob Villa's standards, but they're ok!
But what about the rest of the dude-stuff? How to court a woman, how to be a gentleman, how to be a Dad? Well, I just tell them how I think a Man should act, how he should treat a lady, how to be respectful. And they've learned in their own way about how to be a real Dad. Antiquated or not, they open doors for women, they let ladies go first, and while they're a little young for dating I've already said "Well, if you were the parent of a teenage daughter, how would you want a boy to treat HER?"
I strive to raise up two righteous Christian young men who will go out and be successful in this life -- however that success is defined.
But the other day, a commercial came on tv depicting two men standing at a water cooler. One man started discussing sports, and the other mentioned yoga... Yoga dude ends up with water being thrown in his face. On some levels, I think the commercial is tacky. But, it's as if water was thrown on my face, too, because I realized... I have to teach a sport to my boys. I don't want them left out at the water cooler when they grow up!
I think my youngest son will be ok, he's sociable and is a great conversationalist.
But did I mention my oldest is very high functioning autistic? He has Asperger's Syndrome and has to be taught social skills. He's still coming to terms with the fact not every person will want to hear about his latest coin acquisition or his geckos, and he is slowly accepting the notion of making small talk with friends.
So I sat down with the boys and told them, "You have to pick a sport and come to understand it so when you grow up, and other guys at work start talking sports, you can talk about it too and fit in. It's a dude thing." His response was basically, "Mom, I know I'm a guy. I don't have to like sports." I don't know if I was right or wrong, and I don't know what a man would do but I said, "I don't care if it's your favorite thing, but it's something you need to know. It's a man thing."
So now we're going to pay attention to football and hockey a little more than we already do, and I'm going to pray about other male-bonding things I have to teach the boys.
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