We had our monthly appointment with Dr. Laura yesterday. I can hardly believe it was 7 years ago that we met her and she diagnosed Jared.
When she first enters the room, she likes to interview Jared. I really have to work hard at not answering for Jared when she asks him questions. The first question was “How do you like school?” Now, let me explain that before we went in, I had told Jared that he needed to try his best talking to the doctor. (He was in a bad mood because I had made him leave CARE before gym so I was getting one word answers from him.) I told him that if she asked him about school, he could for instance say that he loves school. So anywho… Jared answers the doctor’s question about school in the same sound of my voice saying “I LOVE it!” She then asks what he loves. He says “Gym”.
It is fascinating for me to sit and just watch. Not judge, because I know she isn’t judging him. She is just gauging where he is. She knows where we came from….a 2 year old who didn’t speak. A three year old who had terrible tantrums. She brings a sense of calmness about her, without making me feel like we are doomed in the coming years. It is like chatting with a friend who has “been there, done that” , and can make me feel like we will be okay.
Several other funny responses:
“Do you do sports?” J- “No” (Seriously, what the heck have I been doing for the last year running him to games and such?)
“Are you a good reader?” J- “Yes” (Wouldn’t want to add anything here. Always to the point, my Jared.)
“Are you a good eater?” J- “Yes” (Hmmm…should we tell her that we are a good eater if you can buy the food at McDonalds?)
“Do you feel any different when you take your medicine (for ADD)?” J- “No”
“Do you know why you take it?” J-“To make me smarter?” (Awww. Poor guy. I have told him it helps him slow down and do better. I didn’t realize in his mind he thought it made him smarter.)
Dr. Laura then told him that he is already smart, and that the medicine just helps his brain process better.
He did so well. He worked at his eye contact for most of the interview. At one point, she was telling him that I was a great advocate for kids with autism in the community. I stopped her and told her that he doesn’t know his diagnosis. She stopped talking, and I tried to read what she was thinking. I always feel so guilty for not telling Jared so I imagine that everyone is judging me.
As we walked out of the building, I took a deep breath that our appointment was over. Though I enjoy talking to Dr Laura, I think deep down I am worried that some big issue is going to come out or that I will break down in sobs . Just call me a worry wart. Jared skipped ahead of me and got in the car. As I helped tighten his buckle, he looks at me and says “Mom, did I do a good job?” I gather his cute little face (with those huge front teeth) in my hands and tell him that he did magnificent. And with a quick kiss (that he wiped off), Jared and I left the clinic where his chart reads ‘Autism’ and back into our life where we keep it hidden and do everything we can to help him be more typical.
Tuesday, February 28, 2012
Monday, December 19, 2011
Autism Letter
I was asked to write a letter to the new Provost at MSU-B to explain why they should continue the autism conference. I guess that they feel we don't have to offer it every year...and maybe at all. Myself and another parent, Laura, are writing letters to give them an idea of what it is like to have a child with autism and why this is all so important.
The letter below was written by me over several days. Then, I couldn't take it any longer and had John proof it and make it sound professional. You know I have a tendency to babble. I think we are a good team! I think it pretty persuasive. :)
--------------------
I am writing regarding the Autism Conference which MSU-B has held each summer the last four years. Thank you for taking the time to allow me to explain why it has been an invaluable resource for me and others.
First, I’d like to welcome you to MSU-B. I graduated from here in 1989 and consider it a wonderful place of higher learning. Second, I want to express my appreciation to MSU-B for its efforts to educate both teachers and parents about the growing epidemic of autism. I should have written a formal thank-you sooner. Third, I believe the conference truly promotes the motto of “access and excellence.”
I am the mother of an eight year old son who is on the Autism Spectrum. Each year I look forward with anticipation to meeting people at the conference who understand my son and learning how to help him become a more successful person. And, I always leave feeling so fortunate to have had the opportunity to listen and learn from very knowledgeable people. It is probably difficult for many people to understand how important the conference is unless you have a child with this diagnosis.
A diagnosis of autism shocks and scares any parent. Typically around the age of two or three, you find out that your child may never speak, may never have a meaningful relationship with anyone, and may have no future. And even worse, there is no cure. In this situation that seems so dire, you also find out you are responsible for putting together your child’s treatment plan. It isn’t quite like a cancer diagnosis where you have professionals that guide you through all of the treatments that are needed.
After 6 months of therapy with a fantastic speech therapist, my son at the age of two was able to learn about 10 words. This progress was huge for us, knowing that he had the capability of communicating. But not all children are lucky enough to have a speech therapist like ours. Some parents in Montana don’t even know where to start. The conference gives everyone a chance to learn and ask questions. No one leaves without getting some direction or mentoring. This sharing of information amongst parents is invaluable.
My son is now 8, and mainstreamed in 2nd grade. Life is getting harder for him, and that also means it is harder for me and my husband. We are not sure how to navigate this world of education when he doesn’t qualify for special education services. We don’t know the best way to nurture friendships for him. And, in the back of my mind, I know there are a whole new set of questions and topics for me to explore at the conference.
At the conference, I get the opportunity to listen to professionals that can give me ideas from nutrition to behavior to IEPs. In addition, the networking opportunity is priceless. There is learning during the sessions and there is even learning at lunchtime. And it isn’t just the speakers. I love it when I am sitting next to an educator. Not only can they give me some advice, but I like to think that I am helping them understand their next student with autism. The more educators can be exposed to autism, the better our community teachers become. The first year I spoke, I met a principal and a teacher from a small rural town that was about to have a little boy with autism start at their school. They came to understand how to better educate that child, and thanked me for giving them a perspective on a child with autism, outside of the classroom.
My first experience with the conference was over 4 years ago. That’s when I first met Kim Schweikert. She brings a passion for helping our children, and it shows. She works tirelessly for us to have quality speakers. It was truly an amazing opportunity in 2010 when Tony Attwood was brought in to speak. She has become a community resource about autism with teachers, physicians, and parents. I always know she is doing all she can for our Autism community, making sure the conference keeps growing, and offering what parents and educators want each year.
What I find interesting, and also a little sad, is that every year we have the conference many parents still need help from our small surrounding towns. Although similar conferences have been held at the University of Montana, many people in the eastern part of Montana cannot travel the long distance to attend. MSU-B is an ideal location for those individuals.
This past year, I sat next to a father whose English was a bit broken. He has a 13 year old daughter on the spectrum that lives with his parents. He came to try to learn more about autism and how to help her. This is just one story out of many I hear every year – parents or relatives looking for answers for a child that they so desperately want to help. That is just one of the reasons that this conference is so important year after year. We all do it for the child just diagnosed or the older child facing new issues, or the parents that were “lost” those first years.
I leave the conference so grateful to have learned so much, but also worried that there is still so much to be done for these children. Everyone knows the statement “It takes a village to raise a child.” This quote is so true with autism. It takes speech therapists, occupational therapists, professors, teachers, behavioral specialists, family support specialists, and parents to all work together to help our children on the autism spectrum. The best place to do this is at the MUS-B Autism Conference where we all have one main purpose – to help educate parents and teachers, and allow these children to become productive, happy adults. We all want the best for them.
The letter below was written by me over several days. Then, I couldn't take it any longer and had John proof it and make it sound professional. You know I have a tendency to babble. I think we are a good team! I think it pretty persuasive. :)
--------------------
I am writing regarding the Autism Conference which MSU-B has held each summer the last four years. Thank you for taking the time to allow me to explain why it has been an invaluable resource for me and others.
First, I’d like to welcome you to MSU-B. I graduated from here in 1989 and consider it a wonderful place of higher learning. Second, I want to express my appreciation to MSU-B for its efforts to educate both teachers and parents about the growing epidemic of autism. I should have written a formal thank-you sooner. Third, I believe the conference truly promotes the motto of “access and excellence.”
I am the mother of an eight year old son who is on the Autism Spectrum. Each year I look forward with anticipation to meeting people at the conference who understand my son and learning how to help him become a more successful person. And, I always leave feeling so fortunate to have had the opportunity to listen and learn from very knowledgeable people. It is probably difficult for many people to understand how important the conference is unless you have a child with this diagnosis.
A diagnosis of autism shocks and scares any parent. Typically around the age of two or three, you find out that your child may never speak, may never have a meaningful relationship with anyone, and may have no future. And even worse, there is no cure. In this situation that seems so dire, you also find out you are responsible for putting together your child’s treatment plan. It isn’t quite like a cancer diagnosis where you have professionals that guide you through all of the treatments that are needed.
After 6 months of therapy with a fantastic speech therapist, my son at the age of two was able to learn about 10 words. This progress was huge for us, knowing that he had the capability of communicating. But not all children are lucky enough to have a speech therapist like ours. Some parents in Montana don’t even know where to start. The conference gives everyone a chance to learn and ask questions. No one leaves without getting some direction or mentoring. This sharing of information amongst parents is invaluable.
My son is now 8, and mainstreamed in 2nd grade. Life is getting harder for him, and that also means it is harder for me and my husband. We are not sure how to navigate this world of education when he doesn’t qualify for special education services. We don’t know the best way to nurture friendships for him. And, in the back of my mind, I know there are a whole new set of questions and topics for me to explore at the conference.
At the conference, I get the opportunity to listen to professionals that can give me ideas from nutrition to behavior to IEPs. In addition, the networking opportunity is priceless. There is learning during the sessions and there is even learning at lunchtime. And it isn’t just the speakers. I love it when I am sitting next to an educator. Not only can they give me some advice, but I like to think that I am helping them understand their next student with autism. The more educators can be exposed to autism, the better our community teachers become. The first year I spoke, I met a principal and a teacher from a small rural town that was about to have a little boy with autism start at their school. They came to understand how to better educate that child, and thanked me for giving them a perspective on a child with autism, outside of the classroom.
My first experience with the conference was over 4 years ago. That’s when I first met Kim Schweikert. She brings a passion for helping our children, and it shows. She works tirelessly for us to have quality speakers. It was truly an amazing opportunity in 2010 when Tony Attwood was brought in to speak. She has become a community resource about autism with teachers, physicians, and parents. I always know she is doing all she can for our Autism community, making sure the conference keeps growing, and offering what parents and educators want each year.
What I find interesting, and also a little sad, is that every year we have the conference many parents still need help from our small surrounding towns. Although similar conferences have been held at the University of Montana, many people in the eastern part of Montana cannot travel the long distance to attend. MSU-B is an ideal location for those individuals.
This past year, I sat next to a father whose English was a bit broken. He has a 13 year old daughter on the spectrum that lives with his parents. He came to try to learn more about autism and how to help her. This is just one story out of many I hear every year – parents or relatives looking for answers for a child that they so desperately want to help. That is just one of the reasons that this conference is so important year after year. We all do it for the child just diagnosed or the older child facing new issues, or the parents that were “lost” those first years.
I leave the conference so grateful to have learned so much, but also worried that there is still so much to be done for these children. Everyone knows the statement “It takes a village to raise a child.” This quote is so true with autism. It takes speech therapists, occupational therapists, professors, teachers, behavioral specialists, family support specialists, and parents to all work together to help our children on the autism spectrum. The best place to do this is at the MUS-B Autism Conference where we all have one main purpose – to help educate parents and teachers, and allow these children to become productive, happy adults. We all want the best for them.
The Best Thing that Happened to Me on Friday
Friday night, after an early exit from the company party, I got the best part of my day. Our life has been hectic these past several weeks. Kate has been missing the slower pace of our life, I believe.
As I was putting Kate to bed, she gave this looooong hug. She wouldn't let go. Then she said words that I am sure I will be hoping to hear in her teen years.
"Mommy, I could stay this way the whole night and the rest of my life."
*sigh* BEST THING EVER.
As I was putting Kate to bed, she gave this looooong hug. She wouldn't let go. Then she said words that I am sure I will be hoping to hear in her teen years.
"Mommy, I could stay this way the whole night and the rest of my life."
*sigh* BEST THING EVER.
Thursday, November 10, 2011
Off the Rails
I know …I know….I haven’t written for a long time. It is hard to write when I don’t see positive things happening in Jared’s life. Lately, I feel like the wheels have gone off the rails. School is harder for him. Friends are harder for him. His anger gets bigger and just “more”. And of course, then I am a wreck. It is hard for me to be a Pollyanna and say that this is all a learning experience. Instead, I go into the mode of “I knew this was coming, and I might have a breakdown.”
When not so great things are happening, I debate on what to write. Do I share the tough times? Do you all look at my boy differently when you hear about how crappy it is? As his mom, I still love him and realize this is part of our journey. But for others, maybe all you picture now is the not so great boy.
What undid me this week was what happened when he was doing spelling with John. He got really mad at one point (John was trying to get him to use his words in the sentence), and started yelling. (He was mad because I don’t normally make him do it , and we know he hates breaking out of routine.) So, at the bottom of his paper he wrote “I hate myself.” John questioned why he would write that. Jared starts sobbing and saying, “Because I don’t have any friends.” Picture that being said with a heart wrenching sob. I was glad I wasn’t part of the discussion because I would have cried too.
Anyone have ideas on how to remain positive through all of this?
When not so great things are happening, I debate on what to write. Do I share the tough times? Do you all look at my boy differently when you hear about how crappy it is? As his mom, I still love him and realize this is part of our journey. But for others, maybe all you picture now is the not so great boy.
What undid me this week was what happened when he was doing spelling with John. He got really mad at one point (John was trying to get him to use his words in the sentence), and started yelling. (He was mad because I don’t normally make him do it , and we know he hates breaking out of routine.) So, at the bottom of his paper he wrote “I hate myself.” John questioned why he would write that. Jared starts sobbing and saying, “Because I don’t have any friends.” Picture that being said with a heart wrenching sob. I was glad I wasn’t part of the discussion because I would have cried too.
Anyone have ideas on how to remain positive through all of this?
Monday, October 17, 2011
Pumpkins for Kids
With an invite from Easter Seals, I attended the annual Pumpkins for Kids dinner that Scottish Rites has every year. I haven't gone for 3 or 4 years. We stopped about the time Jared stopped getting therapy through them. To be honest, John and I still have some of the gift cards we bid on years ago. We made sure to make big donations for the "free" services we received.
It was different to be there after such a long absence. As I met many parents that I have met during our "special" journey, I also saw new faces. Without knowing these parents, I recognize the look. Those first years are the ones where we all seem a little shell-shocked. I know for me, I was still under the delusion I was going to "fix" my son and make him perfectly normal so that he would fit in.
I listened to this year's parent. Her 6 year old daughter had low muscle tone and some motor planning issues. She also spoke that she was slower developing in other aspects. She has been in special education pre-school for several years. When the mom spoke, I was struck about the fact so many parts of her speech could be found in my speech at the autism conference. We talked about our devastation, our tears, the difficulty of putting your 3 year old on a bus.
This mom went further in her honesty. At the end, she spoke of her fears of her child's future. I have never been brave enough to say the words out loud in public. "What will become of her?"
As she cried and had to pause, she then continued on with the question "Will she ever go to college? Will she get married? Will she be happy?"
As a single tear slid down my face in the dark while watching this tiny, beautiful blond girl flashed on the wall, I knew that mother's worries. I glanced over at my other two mommy friends who also have kiddos on the spectrum, they also were wiping away the tears. Our worry is universal.
I am always glad when a parent speaks to the public about our special kids. It gives so many a moment to see our reality. To maybe pause and want to help them...in either an outright donation or in volunteering. One lady whispered, "Makes my problems seem small."
Education doesn't always take place in school. Sometimes it can be delivered by a loving mother and a photo of a little blond angel.
It was different to be there after such a long absence. As I met many parents that I have met during our "special" journey, I also saw new faces. Without knowing these parents, I recognize the look. Those first years are the ones where we all seem a little shell-shocked. I know for me, I was still under the delusion I was going to "fix" my son and make him perfectly normal so that he would fit in.
I listened to this year's parent. Her 6 year old daughter had low muscle tone and some motor planning issues. She also spoke that she was slower developing in other aspects. She has been in special education pre-school for several years. When the mom spoke, I was struck about the fact so many parts of her speech could be found in my speech at the autism conference. We talked about our devastation, our tears, the difficulty of putting your 3 year old on a bus.
This mom went further in her honesty. At the end, she spoke of her fears of her child's future. I have never been brave enough to say the words out loud in public. "What will become of her?"
As she cried and had to pause, she then continued on with the question "Will she ever go to college? Will she get married? Will she be happy?"
As a single tear slid down my face in the dark while watching this tiny, beautiful blond girl flashed on the wall, I knew that mother's worries. I glanced over at my other two mommy friends who also have kiddos on the spectrum, they also were wiping away the tears. Our worry is universal.
I am always glad when a parent speaks to the public about our special kids. It gives so many a moment to see our reality. To maybe pause and want to help them...in either an outright donation or in volunteering. One lady whispered, "Makes my problems seem small."
Education doesn't always take place in school. Sometimes it can be delivered by a loving mother and a photo of a little blond angel.
Monday, October 10, 2011
Common Thread
John has said to me repeatedly, "Things are going well with Jared. Why do you worry? Can't you be happy?" (Okay..paraphrasing here since these are sometimes said in different ways and at different times. But still means the same.) I can't speak for John, but I know that the future hangs over me all too much, and it seems to overshadow most good moments we might be having. I get to thinking that perhaps soemthing is really wrong with me. That maybe I am crazy.
Then I read this on Carrie Link's blog today. Her son Rojo has autism and just started high school. Her daughter, Woohoo, is a senior in high school.
Had our support group meeting at my house this morning. We talked about how we all struggle to enjoy the highs, fearing the lows. When things are even with our kids, when they are happy, in the right schools, have friends, healthy in all ways, we spend that time worrying about when they aren't, instead of celebrating that they are.
Woohoo is going off to college in less than a year. That is to be celebrated. Although it feels like everyone I know has kids that are in college or college bound, I have to remember that that is not the real world. It is a privilege and an honor to be headed to college, not the norm.
Reading that was an affirmation for me. I am not the only parent who struggles with the highs. I always fear the lows.
I guess I am not so crazy. Just a normal autism mom.
She ends with these words:
So, instead of screaming, instead of complaining, instead of worrying, instead of every other lower vibrational emotion or reaction, I am going to count my many blessings, not the least of which is I have a daughter that will be ready for college and gets to go.
Then I read this on Carrie Link's blog today. Her son Rojo has autism and just started high school. Her daughter, Woohoo, is a senior in high school.
Had our support group meeting at my house this morning. We talked about how we all struggle to enjoy the highs, fearing the lows. When things are even with our kids, when they are happy, in the right schools, have friends, healthy in all ways, we spend that time worrying about when they aren't, instead of celebrating that they are.
Woohoo is going off to college in less than a year. That is to be celebrated. Although it feels like everyone I know has kids that are in college or college bound, I have to remember that that is not the real world. It is a privilege and an honor to be headed to college, not the norm.
Reading that was an affirmation for me. I am not the only parent who struggles with the highs. I always fear the lows.
I guess I am not so crazy. Just a normal autism mom.
She ends with these words:
So, instead of screaming, instead of complaining, instead of worrying, instead of every other lower vibrational emotion or reaction, I am going to count my many blessings, not the least of which is I have a daughter that will be ready for college and gets to go.
No matter where we live or how our children function in school, we are all so similiar ...us "special" moms. Always trying to look at the bright side, but usually failing, and then ready to try again.
Tuesday, October 04, 2011
Ironic
I find that some of my best discussions with my son happen when he is sitting behind me in the car, and I am occupied with driving. Perhaps for him the pressure is off to be perfect in his speech because it is of his choosing to talk. Or that he doesn't have to worry about eye contact. But whatever the reason, I treasure those moments giving me insight of what is on his mind. Our conversation went something like this....
"I am the only kid in my class to have an Independent Living buddy."
"It is T. He has autism and I was kind of scared at first."
Gulp. Now what do I even say to that?!
"But now I am not scared. I like my buddy!"
For me, it was such a sweet moment. I wish people could see my son, like he sees T now. He isn't scary or bad....just has his own quirks...just like we all do.
And it was one of those moments that made me feel like a liar to my own son, since he doesn't even know he has the autism diagnosis. I don't want him to think autism is some horrible condition that people have. But he must, since the word put some fear into him with his new buddy. T is a lucky boy because he has such a kind buddy like Jared who sees past the word Autism.
"I am the only kid in my class to have an Independent Living buddy."
"That is cool. What is this person's name?"
"It is T. He has autism and I was kind of scared at first."
Gulp. Now what do I even say to that?!
"But now I am not scared. I like my buddy!"
For me, it was such a sweet moment. I wish people could see my son, like he sees T now. He isn't scary or bad....just has his own quirks...just like we all do.
And it was one of those moments that made me feel like a liar to my own son, since he doesn't even know he has the autism diagnosis. I don't want him to think autism is some horrible condition that people have. But he must, since the word put some fear into him with his new buddy. T is a lucky boy because he has such a kind buddy like Jared who sees past the word Autism.
Monday, October 03, 2011
Before and After
I find it difficult to post when our lives seem so unstable and chaotic. There is that point that you don’t want to over-share or tell every part of your daily lives. So instead I bottle it up in this busy mind of mine and analyze it all every which way. And sadly, it never gets any better...it just tends to make me crazier.
I am still wrestling with the whole decision of when to tell Jared about his diagnosis. I was close to doing it this past weekend based on some things that happened at school. The thought was so overwhelming that I was enveloped in sadness immediately. I felt like if I did it, I needed a picture of Jared the moment before I told him and then one right after. That is how huge this decision feels for me. I know it will forever change the direction of his life and how he thinks of himself. I worry about his self esteem and his view of himself and the world. His relationship with his sister and his peers will function differently after he knows that. He already calls himself stupid. It is just a HUGE decision that is killing me. I feel like no time is the right time.
And it kills me that I have to deliver that news to my little guy. It is yet another thing that seems so unfair in this crappy world of autism.
I am still wrestling with the whole decision of when to tell Jared about his diagnosis. I was close to doing it this past weekend based on some things that happened at school. The thought was so overwhelming that I was enveloped in sadness immediately. I felt like if I did it, I needed a picture of Jared the moment before I told him and then one right after. That is how huge this decision feels for me. I know it will forever change the direction of his life and how he thinks of himself. I worry about his self esteem and his view of himself and the world. His relationship with his sister and his peers will function differently after he knows that. He already calls himself stupid. It is just a HUGE decision that is killing me. I feel like no time is the right time.
And it kills me that I have to deliver that news to my little guy. It is yet another thing that seems so unfair in this crappy world of autism.
Monday, September 19, 2011
We Worry
Written by Carrie Link on her blog. Her son has autism, as well. And I loved how she started out this post....
To say that I am identified by my role as Rojo’s mother, is an understatement. I eat, sleep, breath Rojo – have for fifteen years now. I plan. I organize. I create. I build. I improvise. I catch. I readjust. I schedule. I therapize. I worry. I trust. I laugh. I cry. I bore. I entertain. I discourage. I inspire. All in the name of Rojo.
It’s also fair to say that if you’re a friend of Rojo’s, you’re a friend of mine, and vice-versa. The people that I’m close to in my life, are close to him. No exceptions.
It is so hard for me to separate from autism. I don't know if anyone who doesn't have a child with a disability would understand. I have even had a lady I met tell me that I can't be all about autism. BUT...she will never get it. I am now who I am BECAUSE of autism. Almost every moment of every day, my son is in the back of my mind. I am forever changed.
It is hard to be carefree and goofy. I try, I really do. But it feels "twinged" with my sadness and my worry. There was a very long story online about a young man that the New York Times wrote. I made the mistake of reading it today. It just brings all of my worries rushing over me. It made me on the verge of tears today. I am trying to get my footing back so I can continue only looking day by day...and not so far in the future.
If you are interested in the article, it can be found here.
I want to print this article out and have HR personnel read it so they get that our kiddos have very marketable skills, but can be so misunderstood.
And I think it describes how mothering really does work for a child on the spectrum...that we are fierce mothers who always have a huge goal in mind. To make our child independent.
To say that I am identified by my role as Rojo’s mother, is an understatement. I eat, sleep, breath Rojo – have for fifteen years now. I plan. I organize. I create. I build. I improvise. I catch. I readjust. I schedule. I therapize. I worry. I trust. I laugh. I cry. I bore. I entertain. I discourage. I inspire. All in the name of Rojo.
It’s also fair to say that if you’re a friend of Rojo’s, you’re a friend of mine, and vice-versa. The people that I’m close to in my life, are close to him. No exceptions.
It is so hard for me to separate from autism. I don't know if anyone who doesn't have a child with a disability would understand. I have even had a lady I met tell me that I can't be all about autism. BUT...she will never get it. I am now who I am BECAUSE of autism. Almost every moment of every day, my son is in the back of my mind. I am forever changed.
It is hard to be carefree and goofy. I try, I really do. But it feels "twinged" with my sadness and my worry. There was a very long story online about a young man that the New York Times wrote. I made the mistake of reading it today. It just brings all of my worries rushing over me. It made me on the verge of tears today. I am trying to get my footing back so I can continue only looking day by day...and not so far in the future.
If you are interested in the article, it can be found here.
I want to print this article out and have HR personnel read it so they get that our kiddos have very marketable skills, but can be so misunderstood.
And I think it describes how mothering really does work for a child on the spectrum...that we are fierce mothers who always have a huge goal in mind. To make our child independent.
Friday, September 09, 2011
A Choice
Jared has joined outdoor soccer this year. He really wanted to, though his excitement for it isn't at the practice..or doing his drills.
I am excited to be there because I get to be with some of the moms of the boys at Jared's school. I miss that interaction since I don't pick him up when school is over. It has been fun visiting with them and getting the perspective of the other boys' personalities.
When I got home with Jared last night, he opened his backpack and quickly ripped open an envelope. He said (with great excitement), "YES!"
It was a birthday invite from a boy in his classroom. This boy must have been in a different class last year so I don't know him. Jared asked, "Can I go? Can I go?"
I looked at the time and date, and I knew right away that it was the EXACT same time as his soccer game.
I would be interested in knowing what other moms would do. Do we have an obligation to the team to play? Or can we miss a game and go to the party?
My thoughts are to go to the party. It is pretty typical for kids on the spectrum to be left out of groups or have few friends. It even looks like the next episodes of Parenthood are about my worst fears for my boy....Max getting shunned or being alone at school. In Jared's case, he was only invited to 2 birthday parties last year. It is hard to watch when his sister gets more invites than he does.
So, my gut says to miss the game and to hopefully develop some new friendships. We all know that he isn't going to be a great soccer player so missing a game isn't going to make a large difference in his athletic life.
Now, let's see if John agrees.
I am excited to be there because I get to be with some of the moms of the boys at Jared's school. I miss that interaction since I don't pick him up when school is over. It has been fun visiting with them and getting the perspective of the other boys' personalities.
When I got home with Jared last night, he opened his backpack and quickly ripped open an envelope. He said (with great excitement), "YES!"
It was a birthday invite from a boy in his classroom. This boy must have been in a different class last year so I don't know him. Jared asked, "Can I go? Can I go?"
I looked at the time and date, and I knew right away that it was the EXACT same time as his soccer game.
I would be interested in knowing what other moms would do. Do we have an obligation to the team to play? Or can we miss a game and go to the party?
My thoughts are to go to the party. It is pretty typical for kids on the spectrum to be left out of groups or have few friends. It even looks like the next episodes of Parenthood are about my worst fears for my boy....Max getting shunned or being alone at school. In Jared's case, he was only invited to 2 birthday parties last year. It is hard to watch when his sister gets more invites than he does.
So, my gut says to miss the game and to hopefully develop some new friendships. We all know that he isn't going to be a great soccer player so missing a game isn't going to make a large difference in his athletic life.
Now, let's see if John agrees.
Wednesday, August 31, 2011
The Latest
I got this little snippet from the teacher on Friday:
Jared is a responsible student - listens to directions, follows along, participates in activities and volunteers answers. Great week!
It was wonderful that she sent that to me...without me having to ask. Of course, I was dying to know how he was doing but didn't want to bother her.
Now the crazy Marlene would like to send a follow up question that goes like this "So, is he doing well for a typical kid...or doing a good job for a child with autism?"
But, I am going to not ask that because 1) I will look annoying and 2) It will break my heart if she says going a good job for a kid with autism.
And...I am going to enjoy the fact that we had such great news. I know it is only 3 days into the school year, but I will take what I can get. :)
Jared is a responsible student - listens to directions, follows along, participates in activities and volunteers answers. Great week!
It was wonderful that she sent that to me...without me having to ask. Of course, I was dying to know how he was doing but didn't want to bother her.
Now the crazy Marlene would like to send a follow up question that goes like this "So, is he doing well for a typical kid...or doing a good job for a child with autism?"
But, I am going to not ask that because 1) I will look annoying and 2) It will break my heart if she says going a good job for a kid with autism.
And...I am going to enjoy the fact that we had such great news. I know it is only 3 days into the school year, but I will take what I can get. :)
Tuesday, August 23, 2011
The annual letter to the teacher
To Jared's 2nd Grade Teacher,
Thank you for letting us stop by and give Jared an opportunity to see his new classroom and meet you. As you may know from Jared’s file, he has an autism diagnosis from his pediatrician. He has high functioning autism, and has done very well in both his first and second grade classroom.
Jared has many strengths. He has been a good reader since he was 5. He loves to spell and do math problems. He is a concrete learner and does well with anything that is rule-based. He enjoys socializing with his peers. He is a strong visual learner and does much better if he sees someone do the task and then he follows. He is kind and does not like to disappoint his teachers.
One of Jared’s weaknesses is language. His expressive language is behind his peers. He struggles to tell or write a story. Crafts or art projects seem to also be difficult for him to do. As you may have seen today, eye contact can still be difficult for him. He knows he has to look at his teacher to show he is paying attention, but there are many times I see that he can’t maintain that eye contact. We have him on a small dose of ADHD medication since kindergarten, which has greatly improved his concentration in the classroom.
Most children on the autism spectrum stuggle with sensory issues. Jared is no different. He is sensitive to strong smells. His teacher last year also noticed that he could not have his desk face the window or hall because he would be distracted to the point he could not listen to her. His attention is better when he is closer to the front of the room.
Since Jared was 2 and was diagnosed, he has been seeing a speech therapist and occupational therapist weekly. He has gone to special ed pre-school. He attended two years of Head Start. We have done multiple social groups, PLAY therapy, and had an aide working with him after school. Our goal has always been to keep him mainstreamed and with his peers.
In the last two years, we have maintained communication with both of his teachers, asking that if there is a problem or something that we can work on, the teacher email us. I like to know about his struggles sooner, rather than later. We have spent the summer doing worksheets and writing throughout the week, and also continue to work on topics that are difficult for Jared throughout the school year.
We have not explained to Jared that he has autism, and he does not even realize he is different than his classmates. Up to this point, both of his teachers have told us that he does not stand out from his peers. We are open with his diagnosis with teachers and staff. We just haven’t gotten to the point of telling him, his little sister, or his friends.
When inquiring about teachers for 2nd grade last year, your name was always mentioned as a wonderful teacher. I hope that we can be a team and help Jared be successful this year. Of course, my husband John and I would also love to meet with you about Jared and his school year anytime.
Thank you for giving me the opportunity to explain Jared’s situation. I look forward to talking to you soon.
Warmest Regards,
Jared's Mom who dreads a new school year each and every year and wishes Jared was typical at this time of year moreso than any other time so that she wouldn't have to write the teacher a letter.
Thank you for letting us stop by and give Jared an opportunity to see his new classroom and meet you. As you may know from Jared’s file, he has an autism diagnosis from his pediatrician. He has high functioning autism, and has done very well in both his first and second grade classroom.
Jared has many strengths. He has been a good reader since he was 5. He loves to spell and do math problems. He is a concrete learner and does well with anything that is rule-based. He enjoys socializing with his peers. He is a strong visual learner and does much better if he sees someone do the task and then he follows. He is kind and does not like to disappoint his teachers.
One of Jared’s weaknesses is language. His expressive language is behind his peers. He struggles to tell or write a story. Crafts or art projects seem to also be difficult for him to do. As you may have seen today, eye contact can still be difficult for him. He knows he has to look at his teacher to show he is paying attention, but there are many times I see that he can’t maintain that eye contact. We have him on a small dose of ADHD medication since kindergarten, which has greatly improved his concentration in the classroom.
Most children on the autism spectrum stuggle with sensory issues. Jared is no different. He is sensitive to strong smells. His teacher last year also noticed that he could not have his desk face the window or hall because he would be distracted to the point he could not listen to her. His attention is better when he is closer to the front of the room.
Since Jared was 2 and was diagnosed, he has been seeing a speech therapist and occupational therapist weekly. He has gone to special ed pre-school. He attended two years of Head Start. We have done multiple social groups, PLAY therapy, and had an aide working with him after school. Our goal has always been to keep him mainstreamed and with his peers.
In the last two years, we have maintained communication with both of his teachers, asking that if there is a problem or something that we can work on, the teacher email us. I like to know about his struggles sooner, rather than later. We have spent the summer doing worksheets and writing throughout the week, and also continue to work on topics that are difficult for Jared throughout the school year.
We have not explained to Jared that he has autism, and he does not even realize he is different than his classmates. Up to this point, both of his teachers have told us that he does not stand out from his peers. We are open with his diagnosis with teachers and staff. We just haven’t gotten to the point of telling him, his little sister, or his friends.
When inquiring about teachers for 2nd grade last year, your name was always mentioned as a wonderful teacher. I hope that we can be a team and help Jared be successful this year. Of course, my husband John and I would also love to meet with you about Jared and his school year anytime.
Thank you for giving me the opportunity to explain Jared’s situation. I look forward to talking to you soon.
Warmest Regards,
Jared's Mom who dreads a new school year each and every year and wishes Jared was typical at this time of year moreso than any other time so that she wouldn't have to write the teacher a letter.
Tuesday, August 16, 2011
So Close
When we were at church the other day in the playground, one of the ministers asked me while Jared was nearby "Jared has autism, right?"(She only asked because we had a new member with two children on the spectrum.)
*AACK*
I glanced quickly at him and back to her and said quietly, "Yes he does, but he doesn't know."
She apologized and hoped she hadn't "outed" him. I hoped as well.
It was almost like the show Parenthood when it comes out in front of the child when that is not the timing the parent had hoped for.
The whole issue of telling Jared has become more difficult. It adds to all the other million of things I worry about with him.
But I am not ready to tell. Because once you say it, you can never go back.
From that day on, Jared will always associate that label to himself.
Kate will always associate that label with her brother.
I just want to hang on the fact that for just a bit longer, my son can consider himself "typical."
For just a bit longer, he can feel that there are no constraints or label on himself.
Why wouldn't I want to wait?
Why take away that last bit of our life being more exposed, more open.
I imagine it will be a matter of months before we will have to tell him.
That is longer than I ever expected when he was two. And maybe that is why I don't want to tell him.
Because the minute I was told that he had autism, I looked at him differently. My world changed.
I just want to protect my baby just awhile longer.
*AACK*
I glanced quickly at him and back to her and said quietly, "Yes he does, but he doesn't know."
She apologized and hoped she hadn't "outed" him. I hoped as well.
It was almost like the show Parenthood when it comes out in front of the child when that is not the timing the parent had hoped for.
The whole issue of telling Jared has become more difficult. It adds to all the other million of things I worry about with him.
But I am not ready to tell. Because once you say it, you can never go back.
From that day on, Jared will always associate that label to himself.
Kate will always associate that label with her brother.
I just want to hang on the fact that for just a bit longer, my son can consider himself "typical."
For just a bit longer, he can feel that there are no constraints or label on himself.
Why wouldn't I want to wait?
Why take away that last bit of our life being more exposed, more open.
I imagine it will be a matter of months before we will have to tell him.
That is longer than I ever expected when he was two. And maybe that is why I don't want to tell him.
Because the minute I was told that he had autism, I looked at him differently. My world changed.
I just want to protect my baby just awhile longer.
Friday, August 12, 2011
Another fork in the road
John and I had to make a tough decision this past week. We stopped our services with the organization that provides an aide to Jared.
There were several reasons, but I think that in the end that we felt that it wasn't advancing Jared as much as we had hoped. I think when it started, he learned a lot. Jared was committed and loved his aide. In fact, I would say that he had a crush on her. But in the end, he quit trying so hard. He watched the other kids play at CARE, and he was stuck doing 'work'. I also found out that the older kids had asked what was wrong with Jared since he had an aide. We were really trying to avoid him looking different. But I guess we didn't do a great job at that.
I sent an email to his aide and told her the situation. I haven't heard back. I feel really bad that perhaps she is upset. I don't like it when someone is angry at me (well, at least most of the time it bugs me.) She was a wonderful young lady that we were very lucky to have had for 9 months.
In the end, I have this feeling of angst that maybe we should still keep trying with the aide. I think that we are failing Jared in not doing everything that we can with him. You all know I am Queen of Guilt and Hard on Myself, right?
So as we go into this new school year, things continue to shift. I doubt how we have handled this summer. Maybe we shouldn't have given Jared a break on homework for a month. Is 30 minutes every night enough now? Is he going to stand out in his classroom, in a bad way?
All those negative comments from the Conference have been plagueing me about how hard this is all going to be. And I am doubting myself.
...and that is never a good way to go into a new school year. I hope in the next week that I can find some peace and quit obsessing that it all going to go terribly wrong.
There were several reasons, but I think that in the end that we felt that it wasn't advancing Jared as much as we had hoped. I think when it started, he learned a lot. Jared was committed and loved his aide. In fact, I would say that he had a crush on her. But in the end, he quit trying so hard. He watched the other kids play at CARE, and he was stuck doing 'work'. I also found out that the older kids had asked what was wrong with Jared since he had an aide. We were really trying to avoid him looking different. But I guess we didn't do a great job at that.
I sent an email to his aide and told her the situation. I haven't heard back. I feel really bad that perhaps she is upset. I don't like it when someone is angry at me (well, at least most of the time it bugs me.) She was a wonderful young lady that we were very lucky to have had for 9 months.
In the end, I have this feeling of angst that maybe we should still keep trying with the aide. I think that we are failing Jared in not doing everything that we can with him. You all know I am Queen of Guilt and Hard on Myself, right?
So as we go into this new school year, things continue to shift. I doubt how we have handled this summer. Maybe we shouldn't have given Jared a break on homework for a month. Is 30 minutes every night enough now? Is he going to stand out in his classroom, in a bad way?
All those negative comments from the Conference have been plagueing me about how hard this is all going to be. And I am doubting myself.
...and that is never a good way to go into a new school year. I hope in the next week that I can find some peace and quit obsessing that it all going to go terribly wrong.
Friday, August 05, 2011
Seriously?
It is interesting what people will say to a parent who has a child on the spectrum. And I suppose people say dumb things all the time to anybody who has had something difficult to deal with. I remember reading from a mom that after her child died that someone said, "Well, at least they are in a better place." No comfort in those words.
At the conference, there were at least 4 comments to me along the lines of "Well, just you wait and in 1 (or 2 or 5) years, there are going to be real problems for your son. "
I should have told them, "You don't need to tell me. I worry every single day about the difficulties we will be facing (and have faced) with autism."
And when I am sharing something that concerns me about Jared's lack of development, maybe don't say "Well, he could be so much worse."
My advice is when someone talks to you about their child with autism or special needs or a serious medical condition, just listen. Be understanding. Don't make them feel that their problem is slight or that they should be happy because it could be worse.
Things you could say/do if they say that they are having a rough time-
- I am sorry. You know I am here if you want to talk.
- Hug them or pat them and ask if there is anything you can do.
-Or...just nod and listen. And don't act uncomfortable to be there.
We may look like we have a tough skin or have handled things before, but everyone needs a friendly person in their life.
At the conference, there were at least 4 comments to me along the lines of "Well, just you wait and in 1 (or 2 or 5) years, there are going to be real problems for your son. "
I should have told them, "You don't need to tell me. I worry every single day about the difficulties we will be facing (and have faced) with autism."
And when I am sharing something that concerns me about Jared's lack of development, maybe don't say "Well, he could be so much worse."
My advice is when someone talks to you about their child with autism or special needs or a serious medical condition, just listen. Be understanding. Don't make them feel that their problem is slight or that they should be happy because it could be worse.
Things you could say/do if they say that they are having a rough time-
- I am sorry. You know I am here if you want to talk.
- Hug them or pat them and ask if there is anything you can do.
-Or...just nod and listen. And don't act uncomfortable to be there.
We may look like we have a tough skin or have handled things before, but everyone needs a friendly person in their life.
Tuesday, August 02, 2011
Advice
Gosh darnnit, you would think I would take my own advice. At the Autism Conference, one of my pieces of advice is that you should not take your child's testing scores to heart. It only shows a small picture of your child. Your child has many other strengths. Blah Blah Blah...
Yeah, well I didn't listen to me.
Nancy tested Jared today. He had many scores on different topics. The one she translated into years was vocabulary. 6 years, 3 months.
*deep breath*
My son is operating at a two year deficit.
Knife through the heart.
*blink blink*
I didn't cry. I listened to the words moderately below average. I guess if I am looking for a happy thought was that the word "significantly below average" wasn't said.
Hurray for that, right.
And then the image of little Katie (story posted yesterday) popped in my head. I kept telling myself all morning that we are lucky. Jared is mainstreamed. We will be okay.
But you can't fool my soul.
I felt defeated, as I do every dang year we test.
We work and work. Well, actually Jared works his tail off. We ask more of him than most kids his age.
And we are always, always behind.
And I try to reconcile those test results with the boy that plays the Wii, that argues effectively on why he deserves a bedtime snack, or that plays so well with his friend.
I don't think I ever will be able to reconcile those two kids. They are different situations.
I just have to adjust my picture of Jare. We will make it. The future might not be like I thought, and we may have more issues in school because of his lack of expressive language.
But, daily I have to work on being thankful for what we have so I can quit focusing on the negative.
If anything, Autism has taught me that I cannot control anything, least of all my child's future.
I think I got that lesson far earlier than most parents with typical children.
Yeah, well I didn't listen to me.
Nancy tested Jared today. He had many scores on different topics. The one she translated into years was vocabulary. 6 years, 3 months.
*deep breath*
My son is operating at a two year deficit.
Knife through the heart.
*blink blink*
I didn't cry. I listened to the words moderately below average. I guess if I am looking for a happy thought was that the word "significantly below average" wasn't said.
Hurray for that, right.
And then the image of little Katie (story posted yesterday) popped in my head. I kept telling myself all morning that we are lucky. Jared is mainstreamed. We will be okay.
But you can't fool my soul.
I felt defeated, as I do every dang year we test.
We work and work. Well, actually Jared works his tail off. We ask more of him than most kids his age.
And we are always, always behind.
And I try to reconcile those test results with the boy that plays the Wii, that argues effectively on why he deserves a bedtime snack, or that plays so well with his friend.
I don't think I ever will be able to reconcile those two kids. They are different situations.
I just have to adjust my picture of Jare. We will make it. The future might not be like I thought, and we may have more issues in school because of his lack of expressive language.
But, daily I have to work on being thankful for what we have so I can quit focusing on the negative.
If anything, Autism has taught me that I cannot control anything, least of all my child's future.
I think I got that lesson far earlier than most parents with typical children.
Monday, August 01, 2011
2011 Conference
I have struggled to find the words. The last day of the conference was more than I could have expected. I went this year feeling like I couldn't really "get" anything more. I mean, I have been attending for 4 years. What else could come up that I haven't seen?
Well, it was the Parent Panel that did me in. John was to speak of the dad's perspective. (He did WONDERFUL by the way!) And there were two moms that I have met before. And then there was a new mom to me. Her daughter is 5. She had language, lots of it, at 18 months. And then slowly, it slipped away. And her mom said that her daughter is mute. We had all seen some video of her the previous day with our iPad training. I saw Katie, a lovely little girl who made no eye contact and didn't speak.
This mother started speaking and within 2 minutes, the tears flowed on her part...and then on the audience's part. She was honest, speaking about how autism is horrible. How it steals your precious baby girl away. And then the other two moms got really honest as well. Even more tears. I was a mess...trying not to sob over the real feelings that they have had and I have had, but really have never been so honest to say outloud.
I felt like I was spying on a counseling session. It was raw, emotional, and deeply affected me. And I was so thankful that those ladies gave us all a glimpse of what it feels like to be them. As I look behind me at the audience, every women there was crying. Some were blowing their noses. I wish you all could have been there. Those ladies could give you a glimpse of what the families go through.
As I left the conference, several hours after that panel had taken place, I was still reeling from how strong Katie's mom was, to get up day after day and keep trying.
I went to my mom's house and tried to tell her what I had just witnessed, and I was still crying during parts of it. I told my mom that I feel so lucky that Jared's autism is so slight comparted to little Katie.
Yes. I said it. John and I are lucky that our son has autism to the extent that he does. Jared is verbal. He can tell me if he is hurt. He can tell me if something bad happens to him. And he can tell me that he loves me.
I know I won't be in this same place when school starts and something difficult happens with Jared. I am sure I will be cursing Autism and ranting.
But for a bit, I am going to look around and be grateful, extremely grateful, for what God has give me and my family. And I will be thinking of that honest and eloquent mom who loves her daughter so much, but would give her soul for her daughter to just speak.
Well, it was the Parent Panel that did me in. John was to speak of the dad's perspective. (He did WONDERFUL by the way!) And there were two moms that I have met before. And then there was a new mom to me. Her daughter is 5. She had language, lots of it, at 18 months. And then slowly, it slipped away. And her mom said that her daughter is mute. We had all seen some video of her the previous day with our iPad training. I saw Katie, a lovely little girl who made no eye contact and didn't speak.
This mother started speaking and within 2 minutes, the tears flowed on her part...and then on the audience's part. She was honest, speaking about how autism is horrible. How it steals your precious baby girl away. And then the other two moms got really honest as well. Even more tears. I was a mess...trying not to sob over the real feelings that they have had and I have had, but really have never been so honest to say outloud.
I felt like I was spying on a counseling session. It was raw, emotional, and deeply affected me. And I was so thankful that those ladies gave us all a glimpse of what it feels like to be them. As I look behind me at the audience, every women there was crying. Some were blowing their noses. I wish you all could have been there. Those ladies could give you a glimpse of what the families go through.
As I left the conference, several hours after that panel had taken place, I was still reeling from how strong Katie's mom was, to get up day after day and keep trying.
I went to my mom's house and tried to tell her what I had just witnessed, and I was still crying during parts of it. I told my mom that I feel so lucky that Jared's autism is so slight comparted to little Katie.
Yes. I said it. John and I are lucky that our son has autism to the extent that he does. Jared is verbal. He can tell me if he is hurt. He can tell me if something bad happens to him. And he can tell me that he loves me.
I know I won't be in this same place when school starts and something difficult happens with Jared. I am sure I will be cursing Autism and ranting.
But for a bit, I am going to look around and be grateful, extremely grateful, for what God has give me and my family. And I will be thinking of that honest and eloquent mom who loves her daughter so much, but would give her soul for her daughter to just speak.
Thursday, June 30, 2011
Grace
I found this quote on Carrie Link's blog. She is another special needs mom -
A God that does not "give" us our struggles, but the grace by which to handle them.
I like this quote because I never have believed in that adage (that people tend to say to me about autism) "God never gives you more to handle than you can."
When I hear that, it annoys me because then I think that God gave my little boy autism and his struggles every day because he knew I could handle it?? Seems rather unfair to Jared, if you ask me.
I would rather not believe that old adage is true. I would rather believe that God (periodically) gives me grace to handle Jared's diagnosis. THAT helps me picture HIM beside me when the going gets tough.
I like that picture better.
A God that does not "give" us our struggles, but the grace by which to handle them.
I like this quote because I never have believed in that adage (that people tend to say to me about autism) "God never gives you more to handle than you can."
When I hear that, it annoys me because then I think that God gave my little boy autism and his struggles every day because he knew I could handle it?? Seems rather unfair to Jared, if you ask me.
I would rather not believe that old adage is true. I would rather believe that God (periodically) gives me grace to handle Jared's diagnosis. THAT helps me picture HIM beside me when the going gets tough.
I like that picture better.
Monday, June 27, 2011
'Fortune' ate
It was just a simple Sunday meal.
I made something that (shockingly) both kids ate a portion of...and it wasn't hot dogs or chicken nuggets. There were no fits or large arguments between siblings (though a stray whine was present). Baths had been done before dinner, and we were eating later than normal. The sun was shining and a soft breeze came through the window.
It all felt tranquil.
And I loved every minute of it.
We talked about our good parts of the day. We all had a fortune cookie and laughed about our fortunes. Kate said the word 'butties' instead of 'buddies'. Jared said a 'buttie' is when you are in your room and decide to dance like this....and then proceeded to get up and dance w/his tush sticking out. It was just so typical of an eight year old boy. John and I, as if on cue, looked at each other and laughed. Jared's eyes twinkled and he wiggled a bit more for effect. If I didn't know any better, there was not a speck of autism in the room that night for dinner. I relished every moment of it. The sweet feeling stayed with me, even through my sleep.
And those 40 minutes are a lovely reminder of how far we have come.
I made something that (shockingly) both kids ate a portion of...and it wasn't hot dogs or chicken nuggets. There were no fits or large arguments between siblings (though a stray whine was present). Baths had been done before dinner, and we were eating later than normal. The sun was shining and a soft breeze came through the window.
It all felt tranquil.
And I loved every minute of it.
We talked about our good parts of the day. We all had a fortune cookie and laughed about our fortunes. Kate said the word 'butties' instead of 'buddies'. Jared said a 'buttie' is when you are in your room and decide to dance like this....and then proceeded to get up and dance w/his tush sticking out. It was just so typical of an eight year old boy. John and I, as if on cue, looked at each other and laughed. Jared's eyes twinkled and he wiggled a bit more for effect. If I didn't know any better, there was not a speck of autism in the room that night for dinner. I relished every moment of it. The sweet feeling stayed with me, even through my sleep.
And those 40 minutes are a lovely reminder of how far we have come.
Monday, June 20, 2011
The Process
I am still learning….still processing. This was on a blog that I was reading today. Carrie wrote it about her son who is moving onto high school. As always, I can relate to how we special needs moms move along our journey. I am still searching for that PEACE.
Now he’s an eighth grade “graduate” – graduate being in quotes because he was “placed” in eighth grade, not “promoted.” There was a time when that detail would have swept me at the knees – my boy, not even a grade school graduate – but by the time that decision was made it had been settled in my heart and mind for a little while, anyway.
It’s funny, as recently as four years ago we met with the behavioral pediatrician and these words actually fell from my lips, “Do you think Rojo will be able to go to college?” The fact that he did not spit out his coffee and say, “WHERE have you been? Of COURSE he is not going to college,” is a testament to just how kind he is. Still, that’s where I was four years ago – still holding out a thin ray of hope that with enough support and accommodations, we could possibly make it work.
There is place for hope and a belief that anything is possible, and right next to that place, is a place for reality, acceptance, surrender, and with a magical combination of faith and support… peace. – By Carrie Wilson Link
This is a great comment by a mom that I need to remember…..
It's hard to let go of the dreams we have for our children, not just our special needs children, but our regular kids as well. It's a process which takes time and tears. Be gentle with yourself.
--Interesting to know that even when my child is 14 or 15, I could still be adjusting to what Jared’s future may look like. I guess it is “a process” and one that maybe all of us, special needs moms or not, need to realize that our child is not what we WANT them to be. But instead our children will have the talents, the drive, and the passions that God and themselves have developed.
Now he’s an eighth grade “graduate” – graduate being in quotes because he was “placed” in eighth grade, not “promoted.” There was a time when that detail would have swept me at the knees – my boy, not even a grade school graduate – but by the time that decision was made it had been settled in my heart and mind for a little while, anyway.
It’s funny, as recently as four years ago we met with the behavioral pediatrician and these words actually fell from my lips, “Do you think Rojo will be able to go to college?” The fact that he did not spit out his coffee and say, “WHERE have you been? Of COURSE he is not going to college,” is a testament to just how kind he is. Still, that’s where I was four years ago – still holding out a thin ray of hope that with enough support and accommodations, we could possibly make it work.
There is place for hope and a belief that anything is possible, and right next to that place, is a place for reality, acceptance, surrender, and with a magical combination of faith and support… peace. – By Carrie Wilson Link
This is a great comment by a mom that I need to remember…..
It's hard to let go of the dreams we have for our children, not just our special needs children, but our regular kids as well. It's a process which takes time and tears. Be gentle with yourself.
--Interesting to know that even when my child is 14 or 15, I could still be adjusting to what Jared’s future may look like. I guess it is “a process” and one that maybe all of us, special needs moms or not, need to realize that our child is not what we WANT them to be. But instead our children will have the talents, the drive, and the passions that God and themselves have developed.
Thursday, June 16, 2011
Free at last!
Notice my break from blogging?
I will make a better attempt to keep a journal of Jared's growth this summer.
__
School is over. I CANNOT begin to tell you what a relief it is that it is over. Every day I felt like I was on pins and needles hoping that nothing would go wrong at school. I wonder why I always have this feeling of dread?
We have our aide coming to CARE this summer for about 3 or 4 hours a week. I am hopeful we can build Jared’s skills on language this summer. I know that I have been doing several extra hours a week on his lessons. I feel, once again, that I am in the run of my life to get Jared up to his peers. I wonder when that feeling will ever go away so that I can just let my son learn on his own? And what would that feel like? Would my life feel lighter and freer again?
Jared seems so mature lately…so much like a boy and less like a little kid. He told me yesterday that when he is third grade that he is going to walk home from school. He is adamant that he doesn’t need to go to CARE…he can just come home. Wow~ I never pictured him pulling away this soon and becoming so independent. I am happy and scared at the same time. How do I know when he is going to be ready for the next big steps? At least I can shove that thought out of my mind for a bit because it isn’t happening anytime soon. :)
Baseball is over. Hurray! I was so pleased with his progress. I adore his coach. He is sooo supportive with the boys. I wish he could coach Jared every year. Jared thinks he is a really good ball player. I mean, don’t get me wrong, Jared is fine…but he isn’t as good as he thinks. It is kind of cute that he has great self-esteem about himself.
I am looking forward to enjoying the summer more and worrying less.
I will make a better attempt to keep a journal of Jared's growth this summer.
__
School is over. I CANNOT begin to tell you what a relief it is that it is over. Every day I felt like I was on pins and needles hoping that nothing would go wrong at school. I wonder why I always have this feeling of dread?
We have our aide coming to CARE this summer for about 3 or 4 hours a week. I am hopeful we can build Jared’s skills on language this summer. I know that I have been doing several extra hours a week on his lessons. I feel, once again, that I am in the run of my life to get Jared up to his peers. I wonder when that feeling will ever go away so that I can just let my son learn on his own? And what would that feel like? Would my life feel lighter and freer again?
Jared seems so mature lately…so much like a boy and less like a little kid. He told me yesterday that when he is third grade that he is going to walk home from school. He is adamant that he doesn’t need to go to CARE…he can just come home. Wow~ I never pictured him pulling away this soon and becoming so independent. I am happy and scared at the same time. How do I know when he is going to be ready for the next big steps? At least I can shove that thought out of my mind for a bit because it isn’t happening anytime soon. :)
Baseball is over. Hurray! I was so pleased with his progress. I adore his coach. He is sooo supportive with the boys. I wish he could coach Jared every year. Jared thinks he is a really good ball player. I mean, don’t get me wrong, Jared is fine…but he isn’t as good as he thinks. It is kind of cute that he has great self-esteem about himself.
I am looking forward to enjoying the summer more and worrying less.
Tuesday, June 14, 2011
True Blood
LOVE this picture. It says so much to me.
-I see Brotherhood.
-I see Compassion.
-I see Protection.
-But most of all, I see Love.
This is Jared with his three older male cousins on Christmas. I spent a lot of time with my nephews when they were growing up. They were (and still are) such intelligent and sweet boys. I have seen their potential. They have their whole lives to continue to develop their path...their journey.
When I first looked at this picture, I had that twinge of sadness because I know my son has a long journey ahead. So many things are uncertain in his future... college, marriage, children.
But at second look, there is promise. The hand on the Jared's shoulder tells me that these male cousins will be there to pick him up when life has knocked him down. I know if he needs guidance, they can help hm and guide him. The laughter on all these dear faces show that these young men can bring such happiness for my guy. And in my heart, I know they would do anything for him.
I see three men that will be another support system when John and I won't be here (hopefully that is waaayy in the future). I love these boys! Family when you need them!
Tuesday, May 03, 2011
Future Fears
In the last week, I had a discussion with someone about my fears about the future for Jared. It was said through so many tears and sobs. I believe this person thought that my fears were somewhat unfounded, and I sounded a bit crazy.
Yet today, one of my fears was mentioned in a blog post by Susan Senator. The post was about Autism and Sexuality. And this is the quote that does (sadly) validate one of my fears.
"Peter and other experts suspect that somewhere around 60-80% of folks on the Spectrum will experience some form of sexual abuse in their lives. This doesn’t mean rape necessarily, Peter pointed out, but that, too, is in there as a possible danger."
I have yet to figure out how to live today when I have such great fears about the future. All of the statistics about how life is for children on the spectrum when they become adults tell me that my fears can be very real and not unfounded...and I am not so crazy.
Yet today, one of my fears was mentioned in a blog post by Susan Senator. The post was about Autism and Sexuality. And this is the quote that does (sadly) validate one of my fears.
"Peter and other experts suspect that somewhere around 60-80% of folks on the Spectrum will experience some form of sexual abuse in their lives. This doesn’t mean rape necessarily, Peter pointed out, but that, too, is in there as a possible danger."
I have yet to figure out how to live today when I have such great fears about the future. All of the statistics about how life is for children on the spectrum when they become adults tell me that my fears can be very real and not unfounded...and I am not so crazy.
Wednesday, April 27, 2011
Shhh...
I notice it right away. There is a stillness, a quiet, that surrounds him. It seems odd for a boy who is constantly moving when he is awake. I doubt others see it, but I do. For a mom who has spent the six years watching him and gauging his emotions and attempting to read that quicksilver mind, a slight change is obvious.
I am not sure what the cause was. He was calm all night. There were no problems or arguments. He allowed me to gather him into my arms and hug him easily. We had some great conversations.
I love those moments that happen very infrequently. No other word comes to mind but EASY. He was easy to be around. And of course, my wistful mind thinks, “I wish every day could be easy like this. This may be what my son would be like if it weren’t for autism.” And I wish for him to feel like that more often. I am sure it is more comfortable for him to exist without such anxiety and anxiousness.
Maybe someday, he can achieve that calmness that we all strive for in our lives.
I am not sure what the cause was. He was calm all night. There were no problems or arguments. He allowed me to gather him into my arms and hug him easily. We had some great conversations.
I love those moments that happen very infrequently. No other word comes to mind but EASY. He was easy to be around. And of course, my wistful mind thinks, “I wish every day could be easy like this. This may be what my son would be like if it weren’t for autism.” And I wish for him to feel like that more often. I am sure it is more comfortable for him to exist without such anxiety and anxiousness.
Maybe someday, he can achieve that calmness that we all strive for in our lives.
Wednesday, April 13, 2011
Our Secret
I know the day is coming, sooner rather than later, when I have to tell Jared about his diagnosis. He hears everything, even when I think he isn’t paying attention. He has asked more and more questions about autism which I am sure means that he has heard it used in reference to himself over the past years. Yesterday, he heard me say I was going to an autism meeting.
This morning he asked me why I was going to an autism meeting. I feel horrible every time I evade the truth. It is always on the tip of my tongue. But I know I really can’t tell yet. Both of my kids would tell everyone they met. And of course I am worried that everyone they meet won’t understand what autism is, or just naturally assume he is the “r” word. Autism brings a lot of fear to people. I worry the few friends he has will slowly go away.
I think Jared has an inkling. I think he will slowly start to put it together in the next year. And when we get to that point where I feel okay about telling (and get some support or ideas from therapists), we will sit down and have “the talk”. And I don’t want to cry. I want him to know that he can do anything he puts his mind to, but it will just be more work for him. I don’t want him to hate himself or think any less of himself because of it. I don’t want him to limit himself on what his future can look like.
It is an awful feeling keeping this secret. I feel that by keeping it a secret, we have made it a “bad” thing. I hope Jared will understand when he gets older that I am just protecting him from people’s prejudice until they can be educated.
This morning he asked me why I was going to an autism meeting. I feel horrible every time I evade the truth. It is always on the tip of my tongue. But I know I really can’t tell yet. Both of my kids would tell everyone they met. And of course I am worried that everyone they meet won’t understand what autism is, or just naturally assume he is the “r” word. Autism brings a lot of fear to people. I worry the few friends he has will slowly go away.
I think Jared has an inkling. I think he will slowly start to put it together in the next year. And when we get to that point where I feel okay about telling (and get some support or ideas from therapists), we will sit down and have “the talk”. And I don’t want to cry. I want him to know that he can do anything he puts his mind to, but it will just be more work for him. I don’t want him to hate himself or think any less of himself because of it. I don’t want him to limit himself on what his future can look like.
It is an awful feeling keeping this secret. I feel that by keeping it a secret, we have made it a “bad” thing. I hope Jared will understand when he gets older that I am just protecting him from people’s prejudice until they can be educated.
Friday, April 01, 2011
Thankful
I realized yesterday that it isn't often that I am thankful for things that happen in my life. I know I should...I am blessed with healthy kids, a job, and a nice house. But I normally don't have an inclination to say "Thank you" out loud.
Yesterday morning, I attended a training with a professor from the University. I had just had a difficult morning with Jared. He was telling me No and being disrespectful. I asked her how to handle his behavior, and she sat with me at the end and gave me some great advice.
After that, I went to school and had Parent/Teacher Conference. Kate's was first, and it went very well..of course. She works very hard. She needs to work on her patience (hmmmm...sounds like her mommy). She got moved out of the highest reading group because her teacher said , "It isn't because you can't do it, but because you get so upset when you can't read the hard words and get teary." Poor Kate. We have to work on that. Maybe it is genetic?? ;)
Then, deep breath, it was Jared's turn. I was nervous. He had a couple of 2's on his report card (meaning Needs improvement). However, most of them were based on attention or language. I was prepared to hear things not so great about my son. And, like Kate, I get teary. I cannot explain it. Perhaps it is still me just getting accustomed to the diagnosis and that Jared will never be "typical".
So, his teacher showed us his papers and the quizzes he has done. I have to say, she only had positive things to say. His tests looked great. He is reading a 2nd grade level. His math and spelling were awesome. She said he is doing great socially in class. She said they sit and share with another classmate, and though it is hard for Jared to express himself, he is a good listener and can tell the class what his partner said. Wow! That is great. How wouldn't want a friend who is a great listener?
As I walked to my car, I felt like a huge wait was lifted off my shoulders. When I got in my car, I literally said, "Thank you!" as I looked up to the heavens.
My thanks goes out to the universe, to the wonderful therapists that helped my baby through the years, to the support from friends and family, to my strong-willed hard working boy who has never had a day off from autism and hard work, to God for giving John and myself the strength to keep looking for answers on those days when we want to just give up.
I know there will be difficult days ahead. Heck, it may even be again next week. BUT, for one day I just wanted to savor that feeling of "All is well in our world" for that afternoon.
Yesterday morning, I attended a training with a professor from the University. I had just had a difficult morning with Jared. He was telling me No and being disrespectful. I asked her how to handle his behavior, and she sat with me at the end and gave me some great advice.
After that, I went to school and had Parent/Teacher Conference. Kate's was first, and it went very well..of course. She works very hard. She needs to work on her patience (hmmmm...sounds like her mommy). She got moved out of the highest reading group because her teacher said , "It isn't because you can't do it, but because you get so upset when you can't read the hard words and get teary." Poor Kate. We have to work on that. Maybe it is genetic?? ;)
Then, deep breath, it was Jared's turn. I was nervous. He had a couple of 2's on his report card (meaning Needs improvement). However, most of them were based on attention or language. I was prepared to hear things not so great about my son. And, like Kate, I get teary. I cannot explain it. Perhaps it is still me just getting accustomed to the diagnosis and that Jared will never be "typical".
So, his teacher showed us his papers and the quizzes he has done. I have to say, she only had positive things to say. His tests looked great. He is reading a 2nd grade level. His math and spelling were awesome. She said he is doing great socially in class. She said they sit and share with another classmate, and though it is hard for Jared to express himself, he is a good listener and can tell the class what his partner said. Wow! That is great. How wouldn't want a friend who is a great listener?
As I walked to my car, I felt like a huge wait was lifted off my shoulders. When I got in my car, I literally said, "Thank you!" as I looked up to the heavens.
My thanks goes out to the universe, to the wonderful therapists that helped my baby through the years, to the support from friends and family, to my strong-willed hard working boy who has never had a day off from autism and hard work, to God for giving John and myself the strength to keep looking for answers on those days when we want to just give up.
I know there will be difficult days ahead. Heck, it may even be again next week. BUT, for one day I just wanted to savor that feeling of "All is well in our world" for that afternoon.
Tuesday, March 29, 2011
Light It Up Blue!!
April 1st and 2nd is “Light it up Blue” for Autism Awareness.
Jared went with us to buy a blue light bulb for our front porch. He asked why we were getting one. I processed what I was going to say to him since he doesn’t know he has that diagnosis.
“We put up blue lights for people with autism.”
“Why?” Jared asked.
“So that everyone knows that lots of kids have autism.”
“So that people are nice to them?” Jared asked.
*Awwww* Out of the mouths of babes.
“Yes, buddy. So people can be nice and love them like everyone else.”
Here is to hoping that everyone wearing blue and lighting it up blue on April 1st, normally a day for pranks and jokes, instead becomes a day known for being nice to people on the spectrum…and it leads to many more days of the same for my boy and everyone else’s child.
Note: As Jared gets older, I am still processing on when he should know. I know it will be soon but want him to keep thinking of himself as not a lesser person for his diagnosis. The longer I can put it off, the longer I have to worry about his self esteem. Here was The Diary of a Mom's description for how she wants her daughter to think of her diagnosis of autism.. .
----
She deserves to know that she has gifts. Beautiful, wondrous gifts. That for her, autism is not a disease that needs to be eradicated. Because until we can give her the option, I will not let her grow up feeling like she should hate such a large part of who she is. She deserves to know that SHE is not something in need of fundamental alteration.
Jared went with us to buy a blue light bulb for our front porch. He asked why we were getting one. I processed what I was going to say to him since he doesn’t know he has that diagnosis.
“We put up blue lights for people with autism.”
“Why?” Jared asked.
“So that everyone knows that lots of kids have autism.”
“So that people are nice to them?” Jared asked.
*Awwww* Out of the mouths of babes.
“Yes, buddy. So people can be nice and love them like everyone else.”
Here is to hoping that everyone wearing blue and lighting it up blue on April 1st, normally a day for pranks and jokes, instead becomes a day known for being nice to people on the spectrum…and it leads to many more days of the same for my boy and everyone else’s child.
Note: As Jared gets older, I am still processing on when he should know. I know it will be soon but want him to keep thinking of himself as not a lesser person for his diagnosis. The longer I can put it off, the longer I have to worry about his self esteem. Here was The Diary of a Mom's description for how she wants her daughter to think of her diagnosis of autism.. .
----
She deserves to know that she has gifts. Beautiful, wondrous gifts. That for her, autism is not a disease that needs to be eradicated. Because until we can give her the option, I will not let her grow up feeling like she should hate such a large part of who she is. She deserves to know that SHE is not something in need of fundamental alteration.
Wednesday, March 23, 2011
The Puzzle Piece
Today, it really struck me about the puzzle piece associated with autism. When your child either doesn't speak or can't verbalize things well, you tend to have to "puzzle" over what is wrong. Or...you put the pieces together to figure out the issue might be if they are having a problem.
As written earlier, I am still trying to figure out the poor work. It struck me that maybe it is his allergies. The weather has been nice. His nose has been somewhat runny. Maybe he has headaches. Again...heck if I know!
Then tonight, when he came home he went right into his room and laid in the corner of his bed. I asked him if something was wrong, and he said yes. But then he wouldn't tell me. As the evening wore on, he just got fussier and fussier. He was horrible to Kate. After Kate left for gymnastics, I asked him what was wrong. He said, "nothing". I watched his face crumple and he started to cry, and then sob. He said, "I had a really bad day!
I pulled him on my lap, do small feat since he is getting so tall. The story goes that he told another little boy to do something with a ball to Sam, Jared's frenemy at school. Jared got caught, and he was put in timeout for 5 minutes. I think it was a harsher punishment that he has had for a long time.
My Jared has a pretty sweet little soul. Though he may not care that he disapointed me, he doesn't like it with others. I think he was embarrassed about getting in trouble (a good thing, if you ask me).
After trying to cheer him up with a funny story about how my nephew got in trouble for fighting outside the principal's office, Jared calmed down and smiled. We were able to do an hour of homework without any more fussing.
Jared, my little puzzle.
As written earlier, I am still trying to figure out the poor work. It struck me that maybe it is his allergies. The weather has been nice. His nose has been somewhat runny. Maybe he has headaches. Again...heck if I know!
Then tonight, when he came home he went right into his room and laid in the corner of his bed. I asked him if something was wrong, and he said yes. But then he wouldn't tell me. As the evening wore on, he just got fussier and fussier. He was horrible to Kate. After Kate left for gymnastics, I asked him what was wrong. He said, "nothing". I watched his face crumple and he started to cry, and then sob. He said, "I had a really bad day!
I pulled him on my lap, do small feat since he is getting so tall. The story goes that he told another little boy to do something with a ball to Sam, Jared's frenemy at school. Jared got caught, and he was put in timeout for 5 minutes. I think it was a harsher punishment that he has had for a long time.
My Jared has a pretty sweet little soul. Though he may not care that he disapointed me, he doesn't like it with others. I think he was embarrassed about getting in trouble (a good thing, if you ask me).
After trying to cheer him up with a funny story about how my nephew got in trouble for fighting outside the principal's office, Jared calmed down and smiled. We were able to do an hour of homework without any more fussing.
Jared, my little puzzle.
Monday, March 21, 2011
Our Monday
As my kids finally settle in with some toys and quietly play, I have a moment to relect and type about these feelings swirling around my head.
Friday was rough. Jared's teacher called me to tell me about his poor performance over the last two weeks. It seems he has been failing in most of his work. He couldn't tell her about a story he read. Right away, that phone call took away my great feeling I had that day from a conversation with my manager. Funny how that works. My kids and their days control my days.
Friday afternoon, we had our appt with Jared's doctor. It is our annual appt that she reviews his meds, and we talk for 15 minutes. It really is too short. I wish I could book her for an hour and just say, "What do I do? Where do I go from here?"
Jared did a great job talking to her, but he could not meet her eyes. She was sitting pretty close and I bet when I was his age, my eye contact would be crappy too. We decided to re-evaluate his meds again. And she said his reading issue was something she would expect...just a year early than most boys on the spectrum.
So, I left feeling good and bad. And then over the weekend, I did extra work with him and tried to figure out this puzzle. Besides the over the top behavior of his, the lack of words and explanations are also hard. What is going on in his mind? Why is he failing at school in the last 14 days?
Today, Monday, I woke up with anxiety. I knew I had to talk to the teacher more, and I was afraid of what she would say. I was afraid the situation was more than just Jared hurrying through his work. And...to some extent, it was. We left it that she would evaluate his behavior for a medication eval. And we promised to talk on Friday.
On the drive to work, I drove by the cemetery that my dad is in. Today would have been his 86th birthday. I wished he was here so I could go visit him and forget about the harsh reality of our life. But he isn't...and it hurt.
The doctor called tonight and said we are not upping Jared's medicine. The results showed that he doesn't qualify for a higher dose. Though I am sure that is appropriate, the smallest part of me felt disappointment since more medication might have meant a quick fix.
I know this might seem crazy, but I thought he could be mainstreamed for a long time. I really didn't let the thoughts that he might not "make it" through school enter my head. This all scares me. It is my child, and I am finding out how powerless I am. For all the hours of therapy and extra work, it all won't change. Jared will more than likely be ....what? Go to the Resource Room? Be in Special Education classes? I truly have no idea because I have never thought this way. And no idea...no direction, well...both are very overwhelming for me.
I wanted to be like those stories they sell at Barnes and Noble. The mom never gives up, and her son is nearly normal. But, for us, it is fiction.
He has, and always will, have autism. He will never be typical. And I can't begin to write about how sad I am by that thought tonight.
Friday was rough. Jared's teacher called me to tell me about his poor performance over the last two weeks. It seems he has been failing in most of his work. He couldn't tell her about a story he read. Right away, that phone call took away my great feeling I had that day from a conversation with my manager. Funny how that works. My kids and their days control my days.
Friday afternoon, we had our appt with Jared's doctor. It is our annual appt that she reviews his meds, and we talk for 15 minutes. It really is too short. I wish I could book her for an hour and just say, "What do I do? Where do I go from here?"
Jared did a great job talking to her, but he could not meet her eyes. She was sitting pretty close and I bet when I was his age, my eye contact would be crappy too. We decided to re-evaluate his meds again. And she said his reading issue was something she would expect...just a year early than most boys on the spectrum.
So, I left feeling good and bad. And then over the weekend, I did extra work with him and tried to figure out this puzzle. Besides the over the top behavior of his, the lack of words and explanations are also hard. What is going on in his mind? Why is he failing at school in the last 14 days?
Today, Monday, I woke up with anxiety. I knew I had to talk to the teacher more, and I was afraid of what she would say. I was afraid the situation was more than just Jared hurrying through his work. And...to some extent, it was. We left it that she would evaluate his behavior for a medication eval. And we promised to talk on Friday.
On the drive to work, I drove by the cemetery that my dad is in. Today would have been his 86th birthday. I wished he was here so I could go visit him and forget about the harsh reality of our life. But he isn't...and it hurt.
The doctor called tonight and said we are not upping Jared's medicine. The results showed that he doesn't qualify for a higher dose. Though I am sure that is appropriate, the smallest part of me felt disappointment since more medication might have meant a quick fix.
I know this might seem crazy, but I thought he could be mainstreamed for a long time. I really didn't let the thoughts that he might not "make it" through school enter my head. This all scares me. It is my child, and I am finding out how powerless I am. For all the hours of therapy and extra work, it all won't change. Jared will more than likely be ....what? Go to the Resource Room? Be in Special Education classes? I truly have no idea because I have never thought this way. And no idea...no direction, well...both are very overwhelming for me.
I wanted to be like those stories they sell at Barnes and Noble. The mom never gives up, and her son is nearly normal. But, for us, it is fiction.
He has, and always will, have autism. He will never be typical. And I can't begin to write about how sad I am by that thought tonight.
Tuesday, March 15, 2011
Unlocking
How often do you get to experience a situation that you thought might ever occur? With autism and a hard-working little boy, it might happen more than you think.
Today at speech, it was like Jared was a different kid. He came in very politely. He had some questions for Nancy. He was calm and “in-tune”, at least that is the best I can describe it. As you know, Jared’s biggest difficulty is language. Today, Nancy wanted him to talk about emotions. She had him finding the opposite of an emotion (for instance, opposite of calm...do many 7 year olds know that?). He listened and then wrote down on a white board what Nancy was saying. She later told me this is BIG...taking notes AND listening.
Then, they went to the computer and found a list of L words (because that sound is a hard one for his mouth/speech). They had to use the ‘L’ word in a sentence. Jared’s sentences started out easy, “I use a lock.” Then, he used a few more words, “Kate does not listen to Mom.” And then they got more complex, “My daddy has a hard time turning the lock.” I listened to all of this for 45 minutes. There was NOT ONE WHINE. This is extremely unusual for Jared. He was just such a hard working kid this morning.
As I got him out of the car and walked him into school, I was thinking about what is most difficult for me with autism. And I have come to the realization that it isn’t the fact that he has a hard time learning. I can deal with that and accept it. It is the behaviors that come with autism...his frustration, the 40 to 50 screams that he does with me daily. It is 6 years of tantruming that has worn me down. If somehow that was out of the picture, I could settle into this diagnosis and just deal with the learning disability and his weak areas. But it is the wear and tear of something that feels so personal to me...the telling me ‘No’ and yelling.
The bright side of the day was getting to see who Jared really can be without the behaviors. I was just filled with such happiness over his accomplishments. These moments give me such hope for his growth. I don’t get stuck in the terror I have of a bleak future.
On a day like today, I can feel like anything is possible!
Today at speech, it was like Jared was a different kid. He came in very politely. He had some questions for Nancy. He was calm and “in-tune”, at least that is the best I can describe it. As you know, Jared’s biggest difficulty is language. Today, Nancy wanted him to talk about emotions. She had him finding the opposite of an emotion (for instance, opposite of calm...do many 7 year olds know that?). He listened and then wrote down on a white board what Nancy was saying. She later told me this is BIG...taking notes AND listening.
Then, they went to the computer and found a list of L words (because that sound is a hard one for his mouth/speech). They had to use the ‘L’ word in a sentence. Jared’s sentences started out easy, “I use a lock.” Then, he used a few more words, “Kate does not listen to Mom.” And then they got more complex, “My daddy has a hard time turning the lock.” I listened to all of this for 45 minutes. There was NOT ONE WHINE. This is extremely unusual for Jared. He was just such a hard working kid this morning.
As I got him out of the car and walked him into school, I was thinking about what is most difficult for me with autism. And I have come to the realization that it isn’t the fact that he has a hard time learning. I can deal with that and accept it. It is the behaviors that come with autism...his frustration, the 40 to 50 screams that he does with me daily. It is 6 years of tantruming that has worn me down. If somehow that was out of the picture, I could settle into this diagnosis and just deal with the learning disability and his weak areas. But it is the wear and tear of something that feels so personal to me...the telling me ‘No’ and yelling.
The bright side of the day was getting to see who Jared really can be without the behaviors. I was just filled with such happiness over his accomplishments. These moments give me such hope for his growth. I don’t get stuck in the terror I have of a bleak future.
On a day like today, I can feel like anything is possible!
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