Anyone who knows me well knows that I am a behind the scenes gal. That is where I am most comfortable. I would rather write any day than speak to a group. The thought of speaking in front of people, even a small group, is uncomfortable for me. It's funny (or not so funny) that I now find myself out of my comfort zone on a regular basis.
I have to be more vocal for Luke and I have to be heard. Sometimes, I have to be loud. It's not really so much about volume as it is substance. You see, I am a team leader of sorts. I oversee therapy, school, doctor appointments, etc. He has a great team of doctors, teachers and therapists that work with him. It is my responsibility to take the information given to me by the team, learn from it, and try to determine what will help Luke. I have to speak for him and make sure he gets what he needs.
Really, what parent is not the voice of their child, at least for a period of time? I understand that. But now, I am learning a new language. Words like early intervention, sensory processing, applied behavior analysis, structure, and routine. I am familiar with several of these from my background as an occupational therapist. I am learning that because this is not just a patient, but my own child that is dealing with autism, I need to be reeducated in the best treatment methods to help him. The instruction I had in OT school prepared me to work with other people's children, not necessarily my own. There is an emotional component that makes you forget so much of what was previously learned. Having a special needs child gives you a whole new perspective - on everything.
God has been in this every step of the way. He has answered prayers, opened doors, and given us direction. He has a plan in this for Luke and our family. I have a strong faith in the One who made my little boy. Luke can't talk right now but I have high hopes that he will one day. He is starting to use word approximations and he is vocal, just not really intelligible. I pray that God would give me the patience, strength, perseverance, and clarity to say what needs to be said (or written) and be heard with the intent with which it is given. So, it is in faith that I step out of my corner and speak up. I have to say that it is getting a little easier and should continue to with time and circumstance. But, it's not about me. It is about so much more. My little guy is so precious and I want him to get all the services he needs, not just to get by, but to thrive. I think, in speaking up for Luke, I am finding my voice as well. I pray that it is sufficient, for Luke's sake.
Friday, May 27, 2011
Thursday, May 26, 2011
School's out for ... 2 weeks?
Well, that doesn't sound right. You thought I was going to say "school's out for summer," didn't you? That is the cry of kids everywhere and most parents I know. My oldest, Nathan, is out for the summer and he is so excited. Tomorrow is Luke's last day of school. I should be excited, right? This should be time that we can just enjoy being together, playing, laughing and having fun. For the next two weeks, we will do just that. But thankfully, Luke will be attending a summer program at his school that begins in two weeks. Honestly, I can't wait. Sounds awful, doesn't it? It does to me too. Please don't get me wrong. We will make the most of his time off. We plan to visit family next week. For the second week off, my goal is to have fun with my boys and try to stay sane.
Let me explain. Luke loves school. It is predictable. It is routine. He is happy there. Like most kids with autism, Luke needs routine. Any time off means a change in his schedule and, like his momma, he doesn't always adjust well to change. He does alright for a few days but, when out of his routine for too long, bad things start to happen. He becomes more stressed, therefore, I become more stressed. No matter how structured and routine I try to be with him, it is not the same. I have a five year old that wants my attention as well. The balance of it all is something I haven't quite figured out yet. (I have said before that I am opposed to cloning but there are times when it would be nice to have another me.) So, for the next couple of weeks, I will love playing with my boys and just spending time with them. But, I will be counting down the days to June 13 when Luke gets back into his school routine and our household gets back to "normal" - whatever that is. I am not one who used to enjoy so much routine, but in this case, Luke needs it, I need it, and my family needs it. Planning is everything. Spontaneity is not really an enjoyable option right now.
I don't want to sound as though I am trying to pawn Luke off on his teachers for the summer. It is not like that at all. Please know that I am thankful for a summer program for Luke. His teachers know the importance of routine and this is a routine he loves. Much progress can be made during the summer. When he makes progress, his teachers share in that joy with me. They are a huge part of his life. They love him and he loves them. They give up much of there summer to work with my son and other children with special needs. Again, I say they are angels!
So, enjoy your time off. Enjoy your kids. Happy summer break all - no matter how long it is!
Let me explain. Luke loves school. It is predictable. It is routine. He is happy there. Like most kids with autism, Luke needs routine. Any time off means a change in his schedule and, like his momma, he doesn't always adjust well to change. He does alright for a few days but, when out of his routine for too long, bad things start to happen. He becomes more stressed, therefore, I become more stressed. No matter how structured and routine I try to be with him, it is not the same. I have a five year old that wants my attention as well. The balance of it all is something I haven't quite figured out yet. (I have said before that I am opposed to cloning but there are times when it would be nice to have another me.) So, for the next couple of weeks, I will love playing with my boys and just spending time with them. But, I will be counting down the days to June 13 when Luke gets back into his school routine and our household gets back to "normal" - whatever that is. I am not one who used to enjoy so much routine, but in this case, Luke needs it, I need it, and my family needs it. Planning is everything. Spontaneity is not really an enjoyable option right now.
I don't want to sound as though I am trying to pawn Luke off on his teachers for the summer. It is not like that at all. Please know that I am thankful for a summer program for Luke. His teachers know the importance of routine and this is a routine he loves. Much progress can be made during the summer. When he makes progress, his teachers share in that joy with me. They are a huge part of his life. They love him and he loves them. They give up much of there summer to work with my son and other children with special needs. Again, I say they are angels!
So, enjoy your time off. Enjoy your kids. Happy summer break all - no matter how long it is!
Learning as I go
Isn't it funny how much you think you know about parenting, until you become one? Maybe funny is not the right word. Ignorant. Naive. Those could work too. Probably the most naive words to come from my lips: "My child will not behave like that." - this after observing a child act particularly awful in a hospital waiting room. Now, I did not speak those words to the parent but to a hospital co-worker with me who observed the same thing. I will just tell you, I put both feet in my mouth that day.
Fast forward a couple of years. I have since become a parent of two very active little boys, the youngest of which has autism. My mom and I have to go to the grocery store to pick up just a few items. I don't go to Winn Dixie often, but that day it was close, so we stopped there. The few times that I have been with the boys, I have used the grocery carts shaped like race cars, you know, the ones with the steering wheels in them. The boys love them and it makes my shopping experience much more pleasant. That particular day, the " race carts" were all being used. When I started to place Luke in a regular cart, he lost it. In a big way too. If you were in Winn Dixie that day, you knew we were in the store too. I had never seen Luke act this way. I frantically searched for a cart. I asked the bag boy if he could help me. He very apologetically told me there were not any available. He must have seen my countenance drop because his did too. I am not sure if it was because he felt bad for Luke or because he was going to have to listen to him like this in the store. It didn't get any better. I took him into the bathroom to try and calm him and myself. The stares were hard to deal with. My mother and oldest son, who had previously went in the store to help get items on my list, found us in the bathroom and tried to help me with Luke. I decided to continue with our loud shopping trip and somehow deal with the stares. Thankfully, the bag boy found me (wasn't too hard unless you were hard of hearing) once a cart became available. Once Luke was in there turning the steering wheel, he was as happy as though nothing had ever upset him. Everyone in the store was happy when the "race cart" was found! This was the first meltdown and words don't adequately describe how difficult this was for me or him. I learned that going to the store at the end of what had been a busy day is not a good idea with a small child, muchless one who thrives on routine and has sensory processing issues. It was just too much for him to handle that particular day and he let it out the only way he could.
Another particular incident occurred while my family was on vacation. I had an opportunity to go to a store to do some shopping and Luke was with me. Any two year old in a clothing store for too long is not going to be happy. It was also toward the end of the day ( I am obviously a slow learner). After staying in the store for 30 minutes, Luke was growing increasingly active and irritated. I was the one pushing my luck here, knowing time was not on my side but quite amazed that he was "hanging in there" with me (or so I thought). He grew louder and louder, wanting to run around in the clothing racks. He started crying a little and hitting at my arm. Luke is non verbal, he was trying to tell me he was ready to go. I had asked a lot from him that afternoon and now he was about to boil over. I blame this episode entirely on myself. As it got worse, I tried to hurry and get out of the store as fast as I could. Of course, the kind cashier had problems ringing up my sale and had to do so three different times. The women behind me could see Luke acting out and made a point to tell me "if he were mine, he wouldn't be behaving like that." Well, I will just say, I allowed her comment to ruin two days of my vacation because I was so upset. It was the grace of God that allowed me to speak to her in a kind manner and try to educate her about autism all the while fighting back tears. She was not very kind but spoke back with bitter words. I was sad and angry. I was sad that Luke was so upset. I was angry that I had let the situation get to that point. Maybe I was angry too because of my pride, like she was indicting my parenting skills. Anyone who knows me well know that I cry easily and it is amazing to me that I did not cry in front of the woman. The tears came once I walked out of the door of the store. I let it bother me to the point that I didn't want to go anywhere busy with Luke because I was afraid of what might happen and what people might think. It was paralyzing. I had to learn what he could handle and how to identify when he is having problems with a particular situation. Sometimes that is easier than others. Sometimes it still just sneaks up on me and surprises me out of nowhere.
A couple of months after that incident, I found out about a Parent Leadership Academy in my town put on by the Alabama Parent Education Center. The instructor of the academy encouraged me to attend and, reluctantly, I did. Over the course of three days, I learned how to be an advocate for my child. I learned how to be his voice because he doesn't have one. It was a blessing. I met great people who encouraged me along the way. In this training, I learned to look at my goals as they relate to the challenges my family and I face now. I decided that I wanted to educate others about autism, especially when difficult situations arise in public. I created an autism education postcard to hand out to those around me should I experience more meltdowns and issues people may not realize is about more than just discipline. I saw that there were education cards available, but I wanted this to be specific to Luke and the particular struggles he deals with. I will be ready ( as read as I can be) when the next difficult situation arises.
I would encourage anyone who reads this to pause before passing judgement on that mom or child in the store who is having a hard time. Sure, it may be a child throwing a tantrum or a mom letting their child run wild, but it could be a child who can't take in their surroundings -the movement, the lights, the sounds- and process all that input and it just overloads their little system. It could be a mom at the end of her rope, exhausted and not sure how to best handle the situation. I was probably one of those people who were quick to judge but now I think, " That could be me." I try to whisper a prayer. I don't stare or speak harsh words. Anyone who thinks that is somehow helpful for the mother is foolish. Compassion is much more appreciated.
I am learning as I go. I will never say "my child will never do that" again. I have learned that no matter how you season them, those words taste awful.
Fast forward a couple of years. I have since become a parent of two very active little boys, the youngest of which has autism. My mom and I have to go to the grocery store to pick up just a few items. I don't go to Winn Dixie often, but that day it was close, so we stopped there. The few times that I have been with the boys, I have used the grocery carts shaped like race cars, you know, the ones with the steering wheels in them. The boys love them and it makes my shopping experience much more pleasant. That particular day, the " race carts" were all being used. When I started to place Luke in a regular cart, he lost it. In a big way too. If you were in Winn Dixie that day, you knew we were in the store too. I had never seen Luke act this way. I frantically searched for a cart. I asked the bag boy if he could help me. He very apologetically told me there were not any available. He must have seen my countenance drop because his did too. I am not sure if it was because he felt bad for Luke or because he was going to have to listen to him like this in the store. It didn't get any better. I took him into the bathroom to try and calm him and myself. The stares were hard to deal with. My mother and oldest son, who had previously went in the store to help get items on my list, found us in the bathroom and tried to help me with Luke. I decided to continue with our loud shopping trip and somehow deal with the stares. Thankfully, the bag boy found me (wasn't too hard unless you were hard of hearing) once a cart became available. Once Luke was in there turning the steering wheel, he was as happy as though nothing had ever upset him. Everyone in the store was happy when the "race cart" was found! This was the first meltdown and words don't adequately describe how difficult this was for me or him. I learned that going to the store at the end of what had been a busy day is not a good idea with a small child, muchless one who thrives on routine and has sensory processing issues. It was just too much for him to handle that particular day and he let it out the only way he could.
Another particular incident occurred while my family was on vacation. I had an opportunity to go to a store to do some shopping and Luke was with me. Any two year old in a clothing store for too long is not going to be happy. It was also toward the end of the day ( I am obviously a slow learner). After staying in the store for 30 minutes, Luke was growing increasingly active and irritated. I was the one pushing my luck here, knowing time was not on my side but quite amazed that he was "hanging in there" with me (or so I thought). He grew louder and louder, wanting to run around in the clothing racks. He started crying a little and hitting at my arm. Luke is non verbal, he was trying to tell me he was ready to go. I had asked a lot from him that afternoon and now he was about to boil over. I blame this episode entirely on myself. As it got worse, I tried to hurry and get out of the store as fast as I could. Of course, the kind cashier had problems ringing up my sale and had to do so three different times. The women behind me could see Luke acting out and made a point to tell me "if he were mine, he wouldn't be behaving like that." Well, I will just say, I allowed her comment to ruin two days of my vacation because I was so upset. It was the grace of God that allowed me to speak to her in a kind manner and try to educate her about autism all the while fighting back tears. She was not very kind but spoke back with bitter words. I was sad and angry. I was sad that Luke was so upset. I was angry that I had let the situation get to that point. Maybe I was angry too because of my pride, like she was indicting my parenting skills. Anyone who knows me well know that I cry easily and it is amazing to me that I did not cry in front of the woman. The tears came once I walked out of the door of the store. I let it bother me to the point that I didn't want to go anywhere busy with Luke because I was afraid of what might happen and what people might think. It was paralyzing. I had to learn what he could handle and how to identify when he is having problems with a particular situation. Sometimes that is easier than others. Sometimes it still just sneaks up on me and surprises me out of nowhere.
A couple of months after that incident, I found out about a Parent Leadership Academy in my town put on by the Alabama Parent Education Center. The instructor of the academy encouraged me to attend and, reluctantly, I did. Over the course of three days, I learned how to be an advocate for my child. I learned how to be his voice because he doesn't have one. It was a blessing. I met great people who encouraged me along the way. In this training, I learned to look at my goals as they relate to the challenges my family and I face now. I decided that I wanted to educate others about autism, especially when difficult situations arise in public. I created an autism education postcard to hand out to those around me should I experience more meltdowns and issues people may not realize is about more than just discipline. I saw that there were education cards available, but I wanted this to be specific to Luke and the particular struggles he deals with. I will be ready ( as read as I can be) when the next difficult situation arises.
I would encourage anyone who reads this to pause before passing judgement on that mom or child in the store who is having a hard time. Sure, it may be a child throwing a tantrum or a mom letting their child run wild, but it could be a child who can't take in their surroundings -the movement, the lights, the sounds- and process all that input and it just overloads their little system. It could be a mom at the end of her rope, exhausted and not sure how to best handle the situation. I was probably one of those people who were quick to judge but now I think, " That could be me." I try to whisper a prayer. I don't stare or speak harsh words. Anyone who thinks that is somehow helpful for the mother is foolish. Compassion is much more appreciated.
I am learning as I go. I will never say "my child will never do that" again. I have learned that no matter how you season them, those words taste awful.
Monday, May 23, 2011
How did we get here?
When I picked up Luke from school today, like most days, he was happy to see me. He loves to jump into my arms and give me the biggest hug and kiss. I love it! He has been going to school at Goodwill Easter Seals Child Development Center for the past 6 months and the progress he has made has been absolutely wonderful. Just thinking about it caused me to look back and see where he was before starting this program, thus, the question,"how did we get here?" (Sorry to disappoint any of you who might have thought this was somehow going to be about biology or our beginnings on this planet. I am not that deep a thinker, especially today).
When I took Luke for his 2 year well check up, I really didn't have a clue that anything could be wrong. My oldest, Nathan, was born when I was only 26 weeks 4 days gestation (something I hope to post about sometime). He did not meet milestones on time because of his prematurity so my husband and I didn't think much of it when Luke wasn't talking at 2 years of age. He had some peculiar habits, like becoming intensely focused on an object, such as a toy car, and would get down on it's level and roll it back and forth. He loved to sit in the same spot on the sofa or in his bed and pile blankets on top of him ( now we know it was a sensory input issue). He also had and still has an intense fascination with horses. He loves them. It is like he commes alive when he gets on a horse. Thankfully, we have a very proactive pediatrician who asked the right questions and didn't wait to see if he would just "catch up." He saw something that we didn't. I will never forget his words, "I think we need to have Luke evaluated to rule out autism." Tears filled my eyes immediately. Could something really be wrong?
The next 7 months were filled with evaluations by speech and occupational therapies, assessments by developmental pediatricians, vision and hearing evaluations, evaluation by a pediatric psychologist, DNA evaluation by a geneticist, early intervention therapies and various blood work to look at his iron levels, among other things. Then, on August 23, 2010, it was time for the autism evaluation. Everything else had been ruled out and it was on that day that we heard what we had suspected but didn't want to hear. Luke was diagnosed with autism and so, our journey began.
For the next 3 months, our lives grew progressively more difficult. We saw Luke's frustration increase as his delays in expressive communication became more evident. He just couldn't get it out so he began to scream. This became a frustration for the whole family. We often couldn't figure out what he was trying to communicate to us. We all cried at some point. Often, at many points. Life seemed to be one big mess. I questioned my sanity more than a few times. Just when I thought might lose it, I received a call from the school which Luke now attends telling me that they had an opening for Luke. That was music to my ears. I needed help and I can't begin to express how this helped me.
Luke's first day was November 29, 2010. He has made the most remarkable progress in the last 6 months. His screaming has significantly decreased. He is able to communicate through pictures and his word usage is increasing with each passing week. Most of the time, we can understand what he is trying to tell us. There are those times when we still can't figure it out and we all still get frustrated. He makes wonderful eye contact and he has the sweetest smile and cutest dimples you have ever seen. He is learning to play with his peers now and he participates in activities with his class. He has learned to identify his name on paper and he often imitates his brother in play at home. That is big stuff! He loves school too! When he gets there, he is quick to wave bye but when I return, he greets me with the best hugs ever! This program was an answer to prayer for our Luke and our family. We love each and every person at that school. The teachers and the staff love the kids and the kids love them. It is such a blessing to be able to take your child to a place where they are loved and where they are learning and growing each day. I thank God for the progress I see in Luke's life and I am so thankful for people who are dedicated to helping children with special needs. They are truly angels.
When I took Luke for his 2 year well check up, I really didn't have a clue that anything could be wrong. My oldest, Nathan, was born when I was only 26 weeks 4 days gestation (something I hope to post about sometime). He did not meet milestones on time because of his prematurity so my husband and I didn't think much of it when Luke wasn't talking at 2 years of age. He had some peculiar habits, like becoming intensely focused on an object, such as a toy car, and would get down on it's level and roll it back and forth. He loved to sit in the same spot on the sofa or in his bed and pile blankets on top of him ( now we know it was a sensory input issue). He also had and still has an intense fascination with horses. He loves them. It is like he commes alive when he gets on a horse. Thankfully, we have a very proactive pediatrician who asked the right questions and didn't wait to see if he would just "catch up." He saw something that we didn't. I will never forget his words, "I think we need to have Luke evaluated to rule out autism." Tears filled my eyes immediately. Could something really be wrong?
The next 7 months were filled with evaluations by speech and occupational therapies, assessments by developmental pediatricians, vision and hearing evaluations, evaluation by a pediatric psychologist, DNA evaluation by a geneticist, early intervention therapies and various blood work to look at his iron levels, among other things. Then, on August 23, 2010, it was time for the autism evaluation. Everything else had been ruled out and it was on that day that we heard what we had suspected but didn't want to hear. Luke was diagnosed with autism and so, our journey began.
For the next 3 months, our lives grew progressively more difficult. We saw Luke's frustration increase as his delays in expressive communication became more evident. He just couldn't get it out so he began to scream. This became a frustration for the whole family. We often couldn't figure out what he was trying to communicate to us. We all cried at some point. Often, at many points. Life seemed to be one big mess. I questioned my sanity more than a few times. Just when I thought might lose it, I received a call from the school which Luke now attends telling me that they had an opening for Luke. That was music to my ears. I needed help and I can't begin to express how this helped me.
Luke's first day was November 29, 2010. He has made the most remarkable progress in the last 6 months. His screaming has significantly decreased. He is able to communicate through pictures and his word usage is increasing with each passing week. Most of the time, we can understand what he is trying to tell us. There are those times when we still can't figure it out and we all still get frustrated. He makes wonderful eye contact and he has the sweetest smile and cutest dimples you have ever seen. He is learning to play with his peers now and he participates in activities with his class. He has learned to identify his name on paper and he often imitates his brother in play at home. That is big stuff! He loves school too! When he gets there, he is quick to wave bye but when I return, he greets me with the best hugs ever! This program was an answer to prayer for our Luke and our family. We love each and every person at that school. The teachers and the staff love the kids and the kids love them. It is such a blessing to be able to take your child to a place where they are loved and where they are learning and growing each day. I thank God for the progress I see in Luke's life and I am so thankful for people who are dedicated to helping children with special needs. They are truly angels.
Saturday, May 21, 2011
Simple Pleasures
Yesterday was a great day. It was a busy, tiring day, but a great one. I would have blogged about it last night but I was ahead of schedule. Collapse wasn't on the schedule until Saturday night, but I got to it on Friday evening instead. So, hear is a recap.
Friday morning was an awards ceremony at Covenant Christian School, where Nathan just finished his K4 year. In K4, each student receives an award which targets the particular area of learning in which they excel. This year, their awards were named after authors whose books they have read in class. Nathan received the Eric Carle Award for Colorful and Creative Artistic Ability. If you would have shown me the awards before the ceremony with the names covered, I could have told you that he would receive this award. When he does art, he is more focused than when he does anything else in this world. He is concerned with patterns and order. He loves colors and creating new projects with his art. This has to be why he told me, "Mommy, I am growing up. I don't scribble-scrabble anymore. I stay in the lines." He is 5 and growing up too fast. I love to see how God has gifted him and how he is discovering his strengths. I look forward to seeing how his talents progress over the years. I just don't want those years to come too quickly.
In the middle of this busy day was something that I wouldn't classify as a simple pleasure. I was supposed to get my CPR renewal today ( again!). This is a requirement for my job at the hospital and my certification is up on the 31st of this month. (Yes, I know it is last minute.) On my first attempt at taking this class a couple of months ago, I was 2 minutes late and the class had already begun so I was not permitted in. Not happy. So, I got there 30 minutes early for this class and guess what? It was already full. You have to be kidding me. Really not happy. I have another opportunity to go to a class at the hospital next month. My plan? Get there and hour and a half early and bring a book.
As a result of not having to sit inside all afternoon in a CPR class, I was able to enjoy a beautiful afternoon with my boys, all of them. My husband was off work a little early. We turned on the sprinklers and watched the boys run around in the yard. Listening to them laugh and watching them play was so much fun. Luke imitated everything Nathan did. That is a big thing with autism. Luke loves to imitate his big brother. It was so nice to see. Nathan didn't mind it either. Luke squealed with joy as he ran around like a typical little boy. We all enjoyed every minute. Getting them to come inside was something close to a meltdown, but it was worth all the fun that was had that afternoon.
Last night marked the end of ball season at Mims Park. It was bittersweet because we all made new friends and enjoyed getting together but we were also tired and ready for a break from ball. While all the festivities were going on, Luke was content to blow bubbles and look at a favorite book that he had brought along. He was getting fussy and on nights like this, we have learned that it is best to drive both vehicles. It helps us dodge meltdowns. Roger took Luke home and I stayed with Nathan. When I asked Nathan what he had learned about his first year of t-ball he answers "Those cupcakes we got after the game were really good. I liked that we got a coke after the games." (Thanks Jessica!). I reminded him that he learned about how to run the bases and hold a bat and hit the ball. He said "Oh yea, that too." I love that he had fun in the process. He was on a great team with great coaches. It was eye opening to me as well. I had no idea how intense t-ball can be. Some of the teams had coaches that yelled so much, it almost made me cry. I know if Nathan would have been on their teams, he would never want to play ball again and we would be looking for counselling for him now. They were quite scary. This past Tuesday night, the game had ended and Nathan had gotten his free drink (which we really paid for at the beginning of the season when we signed him up). He looked up at me and asked "Did we win?" I love that. We didn't win that playoff game and he didn't even know it. He just went out and played ball to the best of his ability and had fun in the process. Isn't that what it is all about? Parents make so much more of it than the kids. So, as the night came to a close, I thought about how I would miss the sights, sounds and, yes, even some of the smells of the ballpark. (If you are ever at Mims Park, I highly recommend the Joey burger. It is a feast for the senses!). I celebrated with one last order of the best chili cheese fries ever. Trust me, it was good. Then, I got to go home and collapse. Ahead of schedule. It was a great day.
Friday morning was an awards ceremony at Covenant Christian School, where Nathan just finished his K4 year. In K4, each student receives an award which targets the particular area of learning in which they excel. This year, their awards were named after authors whose books they have read in class. Nathan received the Eric Carle Award for Colorful and Creative Artistic Ability. If you would have shown me the awards before the ceremony with the names covered, I could have told you that he would receive this award. When he does art, he is more focused than when he does anything else in this world. He is concerned with patterns and order. He loves colors and creating new projects with his art. This has to be why he told me, "Mommy, I am growing up. I don't scribble-scrabble anymore. I stay in the lines." He is 5 and growing up too fast. I love to see how God has gifted him and how he is discovering his strengths. I look forward to seeing how his talents progress over the years. I just don't want those years to come too quickly.
In the middle of this busy day was something that I wouldn't classify as a simple pleasure. I was supposed to get my CPR renewal today ( again!). This is a requirement for my job at the hospital and my certification is up on the 31st of this month. (Yes, I know it is last minute.) On my first attempt at taking this class a couple of months ago, I was 2 minutes late and the class had already begun so I was not permitted in. Not happy. So, I got there 30 minutes early for this class and guess what? It was already full. You have to be kidding me. Really not happy. I have another opportunity to go to a class at the hospital next month. My plan? Get there and hour and a half early and bring a book.
As a result of not having to sit inside all afternoon in a CPR class, I was able to enjoy a beautiful afternoon with my boys, all of them. My husband was off work a little early. We turned on the sprinklers and watched the boys run around in the yard. Listening to them laugh and watching them play was so much fun. Luke imitated everything Nathan did. That is a big thing with autism. Luke loves to imitate his big brother. It was so nice to see. Nathan didn't mind it either. Luke squealed with joy as he ran around like a typical little boy. We all enjoyed every minute. Getting them to come inside was something close to a meltdown, but it was worth all the fun that was had that afternoon.
Last night marked the end of ball season at Mims Park. It was bittersweet because we all made new friends and enjoyed getting together but we were also tired and ready for a break from ball. While all the festivities were going on, Luke was content to blow bubbles and look at a favorite book that he had brought along. He was getting fussy and on nights like this, we have learned that it is best to drive both vehicles. It helps us dodge meltdowns. Roger took Luke home and I stayed with Nathan. When I asked Nathan what he had learned about his first year of t-ball he answers "Those cupcakes we got after the game were really good. I liked that we got a coke after the games." (Thanks Jessica!). I reminded him that he learned about how to run the bases and hold a bat and hit the ball. He said "Oh yea, that too." I love that he had fun in the process. He was on a great team with great coaches. It was eye opening to me as well. I had no idea how intense t-ball can be. Some of the teams had coaches that yelled so much, it almost made me cry. I know if Nathan would have been on their teams, he would never want to play ball again and we would be looking for counselling for him now. They were quite scary. This past Tuesday night, the game had ended and Nathan had gotten his free drink (which we really paid for at the beginning of the season when we signed him up). He looked up at me and asked "Did we win?" I love that. We didn't win that playoff game and he didn't even know it. He just went out and played ball to the best of his ability and had fun in the process. Isn't that what it is all about? Parents make so much more of it than the kids. So, as the night came to a close, I thought about how I would miss the sights, sounds and, yes, even some of the smells of the ballpark. (If you are ever at Mims Park, I highly recommend the Joey burger. It is a feast for the senses!). I celebrated with one last order of the best chili cheese fries ever. Trust me, it was good. Then, I got to go home and collapse. Ahead of schedule. It was a great day.
Thursday, May 19, 2011
Just like everyone else
What a week. Monday night: t-ball playoffs. Tuesday night: t-ball playoffs. Wednesday: Nathan's last day of K4 (boo hoo); Wednesday night: AWANA awards night at church and t-ball playoffs. Friday: awards ceremony at school and CPR renewal class. Friday night: closing ceremonies for ball season. Saturday: work at hospital. Saturday evening: collapse.
No. I didn't forget about Thursday. Just trying to take it all in. It has been a big day. Nathan and I enjoyed a great end of year school party at the bowling alley. It was nice to watch him have uninterrupted fun with his friends. That doesn't happen easily. If Luke is with us, too often Nathan's fun is interrupted because I am having to deal with an issue with Luke. I sometimes worry about how this affects Nathan. That is for another day, another post.
Tonight was all about Luke. His school, Goodwill Easter Seals Child Development Center, held their end of the year program and graduation ceremony. Luke did not graduate but his class did have a part in the program. His class sang "Wheels on the Bus" with all the signs and motions. They also demonstrated things they have been learning this year, like identifying their name on paper and naming shapes. Other classes performed songs including "If your happy and you know it" and "Itsy bitsy spider". The performances were great. Luke did fantastic. He sat with his class throughout the song, performed many of the signs to the song in front of a room full of people and he only came to me once given permission by his teacher after they were finished. This all may sound simplistic. For every parent in the room, tonight was anything but simplistic. A group of children played their part in a program that made no distinction in their disabilities but praised their abilities. Tonight, they were like other children. I, for one, couldn't have been more proud of Luke. I know every parent in the room felt the same about their child. I think tonight was as much about the parents as it was for the children. Cameras were flashing everywhere and smiles were coming from every corner of the room. It is amazing to see your child, who has a disability, participate in something that kids do in every other school. They are no different. They are the same. To see them just be kids, not disabled kids, but just kids is a breath of fresh air. Parents want to see their children excel, even if it is moving to "Wheels on the bus". It is all progress. Thank you God for progress.
Now, to get some rest. Tomorrow's another busy day.
No. I didn't forget about Thursday. Just trying to take it all in. It has been a big day. Nathan and I enjoyed a great end of year school party at the bowling alley. It was nice to watch him have uninterrupted fun with his friends. That doesn't happen easily. If Luke is with us, too often Nathan's fun is interrupted because I am having to deal with an issue with Luke. I sometimes worry about how this affects Nathan. That is for another day, another post.
Tonight was all about Luke. His school, Goodwill Easter Seals Child Development Center, held their end of the year program and graduation ceremony. Luke did not graduate but his class did have a part in the program. His class sang "Wheels on the Bus" with all the signs and motions. They also demonstrated things they have been learning this year, like identifying their name on paper and naming shapes. Other classes performed songs including "If your happy and you know it" and "Itsy bitsy spider". The performances were great. Luke did fantastic. He sat with his class throughout the song, performed many of the signs to the song in front of a room full of people and he only came to me once given permission by his teacher after they were finished. This all may sound simplistic. For every parent in the room, tonight was anything but simplistic. A group of children played their part in a program that made no distinction in their disabilities but praised their abilities. Tonight, they were like other children. I, for one, couldn't have been more proud of Luke. I know every parent in the room felt the same about their child. I think tonight was as much about the parents as it was for the children. Cameras were flashing everywhere and smiles were coming from every corner of the room. It is amazing to see your child, who has a disability, participate in something that kids do in every other school. They are no different. They are the same. To see them just be kids, not disabled kids, but just kids is a breath of fresh air. Parents want to see their children excel, even if it is moving to "Wheels on the bus". It is all progress. Thank you God for progress.
Now, to get some rest. Tomorrow's another busy day.
Wednesday, May 18, 2011
It's a Love-Don't Love kinda thing
I know what you are thinking. "Don't you mean love-hate thing? Love-don't love sounds weird." Well, welcome to my world. Things can be just plain weird. For instance, to say that I love autism sounds really bizarre, and yet there are things about it that I love. For me to say that I hate autism may make sense but for me it is almost too harsh. Some days I can shout it from the mountaintops. I will try to explain in the best way that I know how.
First I will start with the negative. I really don't love autism. When I was expecting my little Luke, I dreamed for him. I dreamed of him playing little league and horsing around like little boys do. I dreamed of all the great things he would tell me about - his make believe adventures and all the things he wanted to be when he grew up. I dreamed of what his voice would sound like when he said "I love you Mommy." Not to say this will never happen. I hope with all of my heart that it will. But I don't know. Stinkin' autism.
I really do not love that Luke sometimes has problems processing all the sensory stimuli around him and sometimes it overloads his little system. He can't express it to me verbally so there are those times when all he can do is meltdown. It is like a tantrum but about 100 times worse. There is little I can do but wait it out. It is heartbreaking to see your child go through that and feel powerless to help. All I can do is pray.
I don't love that he is developmentally behind his peers and instead of being at the level of other 3 y/o children, he is more at the level of a 12-18 month old when assessed for language and fine motor skills. He is making progress but it is still disheartening to hear that he is so far behind. It is hard to watch him with "normal" kids because his differences are more evident. And yes, I said "normal." Or maybe I should say "neuro-typical" because that is what children who do not have any neurological impairments are called in the healthcare world. My child is not considered "neuro-typical." So I sometimes feel that he is not normal. Sounds horrible, doesn't it?
I do not love the looks that I get all too often from strangers in the grocery stores and other busy places when Luke is not having a good day and may simply appear as a child in need of more discipline. Those stares hurt. I discipline my child. If discipline cured autism, he would be "neuro-typical" by now. Maybe it is a pride issue. It is like an indictment on my parenting skills, or perceived lack thereof. Those experiences exhaust me.
I love autism. Sounds a little weird to me too. I love my son. He is a gift from God. Psalm 139 tells me that God formed him and knew him long before I ever did. He created Luke in me, knowing exactly what he would be like, autism and all. Luke is Luke. As much as I had dreamed for him, I can't imagine him any other way. At least, not right now. I see his progress with every passing day and week. That is a testimony to God's grace and mercy in his life.
He can't tell me that he loves me, but when he smiles at me and hugs me squeezes me as hard as he can , I know. When he puts his little chubby hands on my face and smiles big enough to show me his dimples, I know. When he nuzzles his little nose into my neck and giggles, I know. When he kisses me all over my face until it is wet with slobber and we are both laughing, I know. He can do this to show me his love and I adore it.
I love the people that I have met because of autism. I am a part of a community of people who, though very different in so many ways, have a common bond. I can empathize with them and they with me. We get each other. If one of our children are having an especially difficult time, we can simply look at each other and just know. No judgment is passed. Maybe an understanding look or a quiet prayer or help if needed. But no condescending looks or harsh words. We just get it.
I love that autism has driven me to my knees. This journey is hard. Beyond hard. I know that I can't do this without the Lord and on the days that I try to do just that, I fail miserably. It is only by His strength that I can make it, that my family can make it. I need to depend fully on God on this journey. Autism reminds me of that.
Every day is an adventure. Yesterday was an exhausting mess. So glad God's mercies are new every morning. Trusting in that promise because I need His mercies and His grace daily to get through all that autism and life have to throw my way today.
First I will start with the negative. I really don't love autism. When I was expecting my little Luke, I dreamed for him. I dreamed of him playing little league and horsing around like little boys do. I dreamed of all the great things he would tell me about - his make believe adventures and all the things he wanted to be when he grew up. I dreamed of what his voice would sound like when he said "I love you Mommy." Not to say this will never happen. I hope with all of my heart that it will. But I don't know. Stinkin' autism.
I really do not love that Luke sometimes has problems processing all the sensory stimuli around him and sometimes it overloads his little system. He can't express it to me verbally so there are those times when all he can do is meltdown. It is like a tantrum but about 100 times worse. There is little I can do but wait it out. It is heartbreaking to see your child go through that and feel powerless to help. All I can do is pray.
I don't love that he is developmentally behind his peers and instead of being at the level of other 3 y/o children, he is more at the level of a 12-18 month old when assessed for language and fine motor skills. He is making progress but it is still disheartening to hear that he is so far behind. It is hard to watch him with "normal" kids because his differences are more evident. And yes, I said "normal." Or maybe I should say "neuro-typical" because that is what children who do not have any neurological impairments are called in the healthcare world. My child is not considered "neuro-typical." So I sometimes feel that he is not normal. Sounds horrible, doesn't it?
I do not love the looks that I get all too often from strangers in the grocery stores and other busy places when Luke is not having a good day and may simply appear as a child in need of more discipline. Those stares hurt. I discipline my child. If discipline cured autism, he would be "neuro-typical" by now. Maybe it is a pride issue. It is like an indictment on my parenting skills, or perceived lack thereof. Those experiences exhaust me.
I love autism. Sounds a little weird to me too. I love my son. He is a gift from God. Psalm 139 tells me that God formed him and knew him long before I ever did. He created Luke in me, knowing exactly what he would be like, autism and all. Luke is Luke. As much as I had dreamed for him, I can't imagine him any other way. At least, not right now. I see his progress with every passing day and week. That is a testimony to God's grace and mercy in his life.
He can't tell me that he loves me, but when he smiles at me and hugs me squeezes me as hard as he can , I know. When he puts his little chubby hands on my face and smiles big enough to show me his dimples, I know. When he nuzzles his little nose into my neck and giggles, I know. When he kisses me all over my face until it is wet with slobber and we are both laughing, I know. He can do this to show me his love and I adore it.
I love the people that I have met because of autism. I am a part of a community of people who, though very different in so many ways, have a common bond. I can empathize with them and they with me. We get each other. If one of our children are having an especially difficult time, we can simply look at each other and just know. No judgment is passed. Maybe an understanding look or a quiet prayer or help if needed. But no condescending looks or harsh words. We just get it.
I love that autism has driven me to my knees. This journey is hard. Beyond hard. I know that I can't do this without the Lord and on the days that I try to do just that, I fail miserably. It is only by His strength that I can make it, that my family can make it. I need to depend fully on God on this journey. Autism reminds me of that.
Every day is an adventure. Yesterday was an exhausting mess. So glad God's mercies are new every morning. Trusting in that promise because I need His mercies and His grace daily to get through all that autism and life have to throw my way today.
Tuesday, May 17, 2011
To blog or not to blog? That WAS the question
I am offically a blogger. Not sure what I think about it yet. Not even sure what I will write, how often I will write or how long it will be. It may have occasional grammatical errors or mispelled words -(happens when my thoughts start moving too fast and the auto correct sneaks up on me!) So, if you follow this blog, please read with an open mind because I will simply be writing from my heart, errors and all!
So, what is in a name? How do you title a blog about life, autism, kids, family? That was a difficult one. "The (Mis)Adventures of the Broomes" was one thought. "Autism Stinks" was another. "Life on this Side" seemed to fit best (and it sounded better than "Where is my Advil!"). When I refer to "this side", I am speaking more about "this side" of eternity rather than "this side" of autism, but both can be inferred because while I am on this earth, autism is with me. My precious Luke was dianosed with it in August of 2010 and my life changed forever, not to mention the lives of my husband, Roger, and oldest son, Nathan. In this blog , I will try to share what this has been like for us thus far and what we deal with on a regular basis. Not all will be about autism because our lives are more than just that. I want to share this journey with others in hopes of increasing awareness and understanding. It may prove to be therapeutic for me as well. It is often hard to put into words what this is like but I will certainly try. I will also try to share information about autism from other blogs that I follow. Autism can be a lonely world, and unless you have a child with autism, then fully understanding it is near impossible. I am not sure that I fully understand it. I hope to share my joys and struggles with you so that you can get a glimpse into my life. Maybe it will prompt to you to whisper a prayer for us or encourage others you might know dealing with similar issues. God has been so merciful and gracious to me and my family. He is teaching me more and more each day, not just through His Word, but through parenting and autism. Is what I have to say important? I don't know. But I will say it and leave that observation to you.
So, what is in a name? How do you title a blog about life, autism, kids, family? That was a difficult one. "The (Mis)Adventures of the Broomes" was one thought. "Autism Stinks" was another. "Life on this Side" seemed to fit best (and it sounded better than "Where is my Advil!"). When I refer to "this side", I am speaking more about "this side" of eternity rather than "this side" of autism, but both can be inferred because while I am on this earth, autism is with me. My precious Luke was dianosed with it in August of 2010 and my life changed forever, not to mention the lives of my husband, Roger, and oldest son, Nathan. In this blog , I will try to share what this has been like for us thus far and what we deal with on a regular basis. Not all will be about autism because our lives are more than just that. I want to share this journey with others in hopes of increasing awareness and understanding. It may prove to be therapeutic for me as well. It is often hard to put into words what this is like but I will certainly try. I will also try to share information about autism from other blogs that I follow. Autism can be a lonely world, and unless you have a child with autism, then fully understanding it is near impossible. I am not sure that I fully understand it. I hope to share my joys and struggles with you so that you can get a glimpse into my life. Maybe it will prompt to you to whisper a prayer for us or encourage others you might know dealing with similar issues. God has been so merciful and gracious to me and my family. He is teaching me more and more each day, not just through His Word, but through parenting and autism. Is what I have to say important? I don't know. But I will say it and leave that observation to you.
Subscribe to:
Posts (Atom)