I will be the first to admit that I love quiet time. Who doesn't? My house is a noisy one and quiet is too often hard to find. So, when the opportunity for a little time of peace comes my way, I usually take it - for the sake of my sanity.
This week was especially nice. My parents, aka "the reinforcements", were in town. When they visit, the boys usually spend a night with them. This is so nice because it gives Roger and I an opportunity for a date night. It is such a blessing to have this opportunity. Well, on this visit, the boys spent two nights this week with Nana and Papa. I am not sure if it was because they wanted to spend some extra time with the boys or they could see "exhausted" written all over me. Maybe a combination of both. They asked for a second night and we didn't fight it. I mean, who would we be to deny grandparents the joy of spending quality time with their only grandkids?
So, do I sound horrible yet? You might say "How could someone get so excited about their kids being away?" I love my boys with all of my heart and miss them when we are apart but, it is because of those times apart - quiet times - that I can better manage the noise and all that comes with it. I was able to enjoy time with Roger, catch up on a few things and get a little extra (much needed) rest. I am not exaggerating when I say it was like a mini-vacation :-) I am so thankful for this respite. So many families don't have this kind of opportunity. I don't take it for granted.
So, this morning, when the boys came through the door, I was ready with a big smile and open arms. And open ears. For any of you who know Nathan, you know he is often shy around others but I promise you, the boy can talk...a lot. (I can't imagine who he gets that from.) He is quite the thinker and I am pretty sure I have heard every thought. I am thankful for that. I always want him to be able to talk to me. And then there is Luke. He still may be considered nonverbal but he can make some noise. We still have some issues with screaming but it is getting better. More and more word approximations are coming out of his sweet little mouth. He takes in everything that is going on around him and it is starting to come out in sounds that I can understand. On the way home from school, he was pointing out of the window and saying "chees" over and over as he looked at the trees. This evening, he took me by the hand over to the bookshelf and wanted me to sit on the floor with him and look at books. He pointed to a clock and said "ca"...a duck and said "cack" for quack...blocks and said "ba"...blue and said "boo"...bed and said "be"...cookie and said "cook". He pretended to shut the gate (by slapping his hand on it) in a picture in one of his favorite farm books. To top it off, he led me to the snack cabinet and said "pop" which, in this case meant popcorn (it means popsicle when he goes to the fridge). He wanted popcorn and asked for it by name! This is huge! It may not sound like much but it is music to my ears! His communication is getting better with every passing week.
The world of autism can be a quiet one for many, and a lonely one. So many kids are nonverbal and never speak at all. For me to get to hear these "words" is such a blessing. I am blessed to have this noise fill my home. Of course, there are days when I am frazzled and cannot hear myself think. But, there are days of laughter and squeals of joy and new words. So, when the peaceful times present themselves to me, I snatch them up and simply enjoy them while they are there. But when it gets a little noisy, I have to remember that with the noise, comes learning and language and opportunity, and that is a great thing. I may love the quiet, but I really love progress! And I love these boys! I thank God for them for they are truly gifts from Him.
Friday, June 17, 2011
Wednesday, June 8, 2011
Do what I do
"I really like you Lukey. You are my best buddy I think. Just keep watching me and do what I do. You'll grow up to be a great little guy." Those words brought a big smile to my face this afternoon. Definitely worthy of a Facebook post. Even worthy of a blog post.
Nathan and Luke have played all day long (would love to say they got along all day too but that is another story). Lots of fun. Some fussing too. Everywhere Nathan went, Luke was close behind doing the same thing. He was his big brother's shadow. Up the ladder...down the slide into the pool...run across backyard...jump on mini tramp...slide into the dirt...run back across yard...jump into pool...repeat. You get the idea. It was predictable. It was fun to watch them finally play together (that is, after fussing about who would go first down the slide.)
Nathan took it upon himself to be Luke's teacher today, and, for the most part, Luke was a pretty good student. All afternoon, it was "Luke, walk on your tip toes...bounce the ball...follow me...jump like this...say choo-choo." Nathan gave frequent progress reports too. "Mommy, Luke bounced the ball just like me...Luke said choo-choo..." It was fun to listen in as Nathan gave Luke advice too. "Luke, it is important to exercise and you have to eat right if you want to be healthy. You know, like eating healthy chips.". (BTW, we DO eat fruits and veggies!)
What was simple, but great to see, was Luke imitating his brother. He was learning from him. He is learning and growing and living. (Thank you God for that!) He understands so much and it is good to see him respond to us. Even when discipline was required (for both of them!) when they were doing something unacceptable, I could tell when Luke knew when he was doing something he shouldn't. He is learning what he can do and what he is not supposed to do. He is very receptive and very teachable (and so completely lovable!). He gets excited when he learns something new. I love to see that! It is another piece of the puzzle that is being unlocked as we learn more and more about him. It is progress. I love progress!
(As a side note, I started to think about how we all have learned at some point by imitating someone or something. Caused me to consider who/what I have been imitating. What kind of example am I giving my boys to imitate? Can I say, like Paul, "imitate me as I imitate Christ"? Ouch. Convicting...)
Nathan and Luke have played all day long (would love to say they got along all day too but that is another story). Lots of fun. Some fussing too. Everywhere Nathan went, Luke was close behind doing the same thing. He was his big brother's shadow. Up the ladder...down the slide into the pool...run across backyard...jump on mini tramp...slide into the dirt...run back across yard...jump into pool...repeat. You get the idea. It was predictable. It was fun to watch them finally play together (that is, after fussing about who would go first down the slide.)
Nathan took it upon himself to be Luke's teacher today, and, for the most part, Luke was a pretty good student. All afternoon, it was "Luke, walk on your tip toes...bounce the ball...follow me...jump like this...say choo-choo." Nathan gave frequent progress reports too. "Mommy, Luke bounced the ball just like me...Luke said choo-choo..." It was fun to listen in as Nathan gave Luke advice too. "Luke, it is important to exercise and you have to eat right if you want to be healthy. You know, like eating healthy chips.". (BTW, we DO eat fruits and veggies!)
What was simple, but great to see, was Luke imitating his brother. He was learning from him. He is learning and growing and living. (Thank you God for that!) He understands so much and it is good to see him respond to us. Even when discipline was required (for both of them!) when they were doing something unacceptable, I could tell when Luke knew when he was doing something he shouldn't. He is learning what he can do and what he is not supposed to do. He is very receptive and very teachable (and so completely lovable!). He gets excited when he learns something new. I love to see that! It is another piece of the puzzle that is being unlocked as we learn more and more about him. It is progress. I love progress!
(As a side note, I started to think about how we all have learned at some point by imitating someone or something. Caused me to consider who/what I have been imitating. What kind of example am I giving my boys to imitate? Can I say, like Paul, "imitate me as I imitate Christ"? Ouch. Convicting...)
Friday, June 3, 2011
Imagine a Life with Autism by Dr. Caroline Gomez and State Senator Cam Ward
Imagine A Life With Autism
By Caroline Gomez, Ph.D, State Autism Coordinator and State Senator Cam Ward
This editorial appeared in the Huntsville Times, Birmingham News, Montgomery Advertiser, Mobile Press Register, and Tuscaloosa News during Autism Awareness Month. We hope it gave outsiders pause and a new lens with which to view autism.
Close your eyes and imagine for a moment that as a child you are woken in the morning after sleeping for only a few hours. Exhaustion. You get out of bed, but have no idea where you are going that day. Anxiety. Someone helps you get dressed, but the tag in the back of your shirt feels like a pin pricking your skin over and over. Discomfort. You sit at the table for breakfast, but can't eat because your feet don't touch the ground and you begin to feel dizzy. Confusion. You ride in the car without knowing where you are going. Distress. You sit in the grocery cart as told, but the fluorescent lights overhead cause your head to begin throbbing. Pain. Now imagine that all of this takes place and you have no way to tell anyone that your are experiencing exhaustion, anxiety, discomfort , confusion, distress, and now intense pain and this was only the first hour of your day. How would you "communicate" your desperate need to get out of that grocery store before your head explodes? It sounds like a nightmare for many of us but it is a living reality for many children.
Children with autism spectrum disorder (ASD) are often living with these and other all-consuming challenges as they simply navigate through the chaos of an hour or a day. They often can't communicate their desperate needs and this creates an unrealistic expectation from many, including the person in a grocery store passing the child with ASD screaming and kicking in a cart while his mother tries desperately to ignore the obvious display of contempt. Many remain unaware that screaming and other socially unacceptable behavior that is witnessed in such a situation is not willful misbehavior. In fact, the child is likely in distress or pain and simply does not know how to communicate or respond appropriately to his overewhelming and confusing world.
ASD is a complex neurological disorder now present in 1 in every 100 children and 1 in every 70 boys in the United States. These children may have keen interests and skills in certain areas but also have significant difficulty communicating and understanding the social rules of our world. In addition, sights, sounds, and touch can be so overwhelming that they have to scream, literally or otherwise, to get our attention and to get the very basic of needs met.
Have you heard the screams, literal or otherwise, loud or quiet? They cannot be ignored when in such great numbers. Are their screams to know or be known, to understand or be understood, to challenge or be challenged, or any or all of the above? The Alabama Interagency Autism Coordinating Council, created by Act#2009-295 the Riley Ward Alabama Autism Support Act of 2009, is working to meet the urgent need for a statewide comprehensive system of care for individuals with ASD and their families. This Council is a collaborative effort of parents, professionals, elected officials and those who are on the autism spectrum. As we work toward a system of care these children are, in fact, our teachers, teaching us patience, compassion, sensitivity, and unconditional love-the most vital lessons of the human condition.
Please visit http://www.autism.alabama.gov/ to learn of the work in progress and how you can participate in this very worthy effort.
By Caroline Gomez, Ph.D, State Autism Coordinator and State Senator Cam Ward
This editorial appeared in the Huntsville Times, Birmingham News, Montgomery Advertiser, Mobile Press Register, and Tuscaloosa News during Autism Awareness Month. We hope it gave outsiders pause and a new lens with which to view autism.
Close your eyes and imagine for a moment that as a child you are woken in the morning after sleeping for only a few hours. Exhaustion. You get out of bed, but have no idea where you are going that day. Anxiety. Someone helps you get dressed, but the tag in the back of your shirt feels like a pin pricking your skin over and over. Discomfort. You sit at the table for breakfast, but can't eat because your feet don't touch the ground and you begin to feel dizzy. Confusion. You ride in the car without knowing where you are going. Distress. You sit in the grocery cart as told, but the fluorescent lights overhead cause your head to begin throbbing. Pain. Now imagine that all of this takes place and you have no way to tell anyone that your are experiencing exhaustion, anxiety, discomfort , confusion, distress, and now intense pain and this was only the first hour of your day. How would you "communicate" your desperate need to get out of that grocery store before your head explodes? It sounds like a nightmare for many of us but it is a living reality for many children.
Children with autism spectrum disorder (ASD) are often living with these and other all-consuming challenges as they simply navigate through the chaos of an hour or a day. They often can't communicate their desperate needs and this creates an unrealistic expectation from many, including the person in a grocery store passing the child with ASD screaming and kicking in a cart while his mother tries desperately to ignore the obvious display of contempt. Many remain unaware that screaming and other socially unacceptable behavior that is witnessed in such a situation is not willful misbehavior. In fact, the child is likely in distress or pain and simply does not know how to communicate or respond appropriately to his overewhelming and confusing world.
ASD is a complex neurological disorder now present in 1 in every 100 children and 1 in every 70 boys in the United States. These children may have keen interests and skills in certain areas but also have significant difficulty communicating and understanding the social rules of our world. In addition, sights, sounds, and touch can be so overwhelming that they have to scream, literally or otherwise, to get our attention and to get the very basic of needs met.
Have you heard the screams, literal or otherwise, loud or quiet? They cannot be ignored when in such great numbers. Are their screams to know or be known, to understand or be understood, to challenge or be challenged, or any or all of the above? The Alabama Interagency Autism Coordinating Council, created by Act#2009-295 the Riley Ward Alabama Autism Support Act of 2009, is working to meet the urgent need for a statewide comprehensive system of care for individuals with ASD and their families. This Council is a collaborative effort of parents, professionals, elected officials and those who are on the autism spectrum. As we work toward a system of care these children are, in fact, our teachers, teaching us patience, compassion, sensitivity, and unconditional love-the most vital lessons of the human condition.
Please visit http://www.autism.alabama.gov/ to learn of the work in progress and how you can participate in this very worthy effort.
Wednesday, June 1, 2011
Can I get a translator, a referee, and a couple of Advil, please?
The boys and I have had a great few days visiting with family. We still have one more day before heading home. Luke has been out of his routine for several days now. It is starting to show.
Nathan and Luke are early risers. They always have been. But, from the time their little feet hit the floor, I knew it was going to be a long day, in more ways than one. Lots of tears and screaming (Luke, not me). No matter how hard I tried, I couldn't figure out what he was trying to tell me. I only knew he was upset. His screaming wasn't about wanting a toy his brother had. It wasn't about wanting to eat. It wasn't about needing a clean pull up. I had taken care of all of that but he was still upset. I tried using sign language and pointing. Usually, when I ask Luke to "show me," he will take me to what he needs or wants. Nothing helped. Nothing made him happy. He and his brother were acting like brothers and were at odds over everything. Luke was still the one screaming but, by then, I was in tears too.
So, after trying to make the most of a crazy morning, what do I do? Try to take it easy? No. We pile in the car and go to Chick Fil A for lunch. Doesn't that make everything better? It went ok. Just a few stares our way this time. The boys had a little fun in the play area there and it was a relief to have a normal moment in the midst of a not-so-normal day. On the way home, Luke finally crashed. He was tired. We all were tired and naps came easily for the boys (and for myself). No one really fought sleep today. It was much needed and, even if it only helped a little, it still helped. Luke was still out of sorts but the screaming was somewhat better. It then became about getting through a fussy afternoon and making it until bedtime. After lots of playtime, including fun in the kiddie pool and in the newly created mud puddles that were formed by all the splashing, the boys and I made it to bedtime! Woo hoo!
To say that it has been an exhausting, frustrating day is an understatement. It must be so frustrating for Luke. It try to imagine what it is like to try to communicate and have no one understand you. Sometimes, I feel like that and I can speak. How much more difficult for him? It simply breaks my heart for my little guy.
I am so thankful for my family. My mother, especially today, has helped my in a tremendous way just by being here. Both she and my dad are coming to realize the day to day stress that me and my family face right now. We are blessed to have supportive family on both sides that love and pray for us. I personally don't know what I would do without them. My mother (so kind and so brave) is sending me out tomorrow for some "me" time ( aka "mental health" time)and I am terrible excited. Good coffee is in my sights. Maybe work on the blog. Maybe even a movie - no chick flick though. Need something with no emotional highs and lows. Maybe action. Who knows? I am so looking forward to this before heading home on Friday.
I apologize if this post had been a little on the whiny side. It has just been a tough day, physically and emotionally. My words probably don't accurately convey how tough. But, tomorrow is a new day. I lean on the promise that God's mercies are new every morning. They always are, without fail. I know His grace is sufficient for all that He has prepared for me. I am so thankful for these truths! I need reminding of them daily. God, please give me wisdom and strength. I am in need.
Nathan and Luke are early risers. They always have been. But, from the time their little feet hit the floor, I knew it was going to be a long day, in more ways than one. Lots of tears and screaming (Luke, not me). No matter how hard I tried, I couldn't figure out what he was trying to tell me. I only knew he was upset. His screaming wasn't about wanting a toy his brother had. It wasn't about wanting to eat. It wasn't about needing a clean pull up. I had taken care of all of that but he was still upset. I tried using sign language and pointing. Usually, when I ask Luke to "show me," he will take me to what he needs or wants. Nothing helped. Nothing made him happy. He and his brother were acting like brothers and were at odds over everything. Luke was still the one screaming but, by then, I was in tears too.
So, after trying to make the most of a crazy morning, what do I do? Try to take it easy? No. We pile in the car and go to Chick Fil A for lunch. Doesn't that make everything better? It went ok. Just a few stares our way this time. The boys had a little fun in the play area there and it was a relief to have a normal moment in the midst of a not-so-normal day. On the way home, Luke finally crashed. He was tired. We all were tired and naps came easily for the boys (and for myself). No one really fought sleep today. It was much needed and, even if it only helped a little, it still helped. Luke was still out of sorts but the screaming was somewhat better. It then became about getting through a fussy afternoon and making it until bedtime. After lots of playtime, including fun in the kiddie pool and in the newly created mud puddles that were formed by all the splashing, the boys and I made it to bedtime! Woo hoo!
To say that it has been an exhausting, frustrating day is an understatement. It must be so frustrating for Luke. It try to imagine what it is like to try to communicate and have no one understand you. Sometimes, I feel like that and I can speak. How much more difficult for him? It simply breaks my heart for my little guy.
I am so thankful for my family. My mother, especially today, has helped my in a tremendous way just by being here. Both she and my dad are coming to realize the day to day stress that me and my family face right now. We are blessed to have supportive family on both sides that love and pray for us. I personally don't know what I would do without them. My mother (so kind and so brave) is sending me out tomorrow for some "me" time ( aka "mental health" time)and I am terrible excited. Good coffee is in my sights. Maybe work on the blog. Maybe even a movie - no chick flick though. Need something with no emotional highs and lows. Maybe action. Who knows? I am so looking forward to this before heading home on Friday.
I apologize if this post had been a little on the whiny side. It has just been a tough day, physically and emotionally. My words probably don't accurately convey how tough. But, tomorrow is a new day. I lean on the promise that God's mercies are new every morning. They always are, without fail. I know His grace is sufficient for all that He has prepared for me. I am so thankful for these truths! I need reminding of them daily. God, please give me wisdom and strength. I am in need.
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