In the spirit of the approaching Halloween season I wanted to talk about my favorite part the costumes. Every year I get almost giddy thinking about what my boys are going to be for all the festivities. This probably drives my poor husband insane for I usually start obsessing about it months before October even arrives. Maybe it's the fantasy lover in me, maybe it's the the little girl still longing to play make believe, or maybe it's the creative treasure hunter screaming to make something once a year. Whatever the reason I love the decisions and the making of my families costumes. Even as a little girl my Mom worked hard to make sure I was Halloween ready right down to my ruby slippers, spider embroidered witch dress, and my red yarn raggedy Anne wig. I really appreciate all her hard work. That is easy to say now that I am attempting to do it myself. While I could go the easy route and do the store bought costumes every year save myself some time, and stress, but apparently that creative monster is much stronger than the need to be stress free! So as I go off to the thrift stores, and glue the last piece of felt on, and tape up the last inch of boots, I know I made the costumes with love and excitement. While they will ended up sticky with candy, dirt, and who know what else on the first night of fun filled activities it will all still be worth it to me. So this year my boys along with my hubby and I will be Superhero ready in our made at home with love costumes!
Thursday, October 29, 2009
Creative Costume Monster
In the spirit of the approaching Halloween season I wanted to talk about my favorite part the costumes. Every year I get almost giddy thinking about what my boys are going to be for all the festivities. This probably drives my poor husband insane for I usually start obsessing about it months before October even arrives. Maybe it's the fantasy lover in me, maybe it's the the little girl still longing to play make believe, or maybe it's the creative treasure hunter screaming to make something once a year. Whatever the reason I love the decisions and the making of my families costumes. Even as a little girl my Mom worked hard to make sure I was Halloween ready right down to my ruby slippers, spider embroidered witch dress, and my red yarn raggedy Anne wig. I really appreciate all her hard work. That is easy to say now that I am attempting to do it myself. While I could go the easy route and do the store bought costumes every year save myself some time, and stress, but apparently that creative monster is much stronger than the need to be stress free! So as I go off to the thrift stores, and glue the last piece of felt on, and tape up the last inch of boots, I know I made the costumes with love and excitement. While they will ended up sticky with candy, dirt, and who know what else on the first night of fun filled activities it will all still be worth it to me. So this year my boys along with my hubby and I will be Superhero ready in our made at home with love costumes!
Friday, October 23, 2009
Connecting The Puzzles With Love
Kyle and Sarah Broady like so many of America's couples fell in love in their college years, and a couple of years later were married. They were off reaching for their dreams and walking hand in hand on the path that the Lord had laid out for them. Kyle Broady is the worship and family pastor at a Baptist Church. Sarah is a homemaker, home school teacher, and entrepreneur of Totes'N-Stuff. Kyle and Sarah are also the proud parents of three darling little boys Benjamin, Samuel, and Joshua. Today Sarah has been kind enough to let us on the inside of her family's life in order to share the blessings and the struggles of day to day life with their son Samuel. Samuel the beautiful young life made in the very imagine of our own God and entrusted to Kyle and Sarah as their son. Samuel was 27 months old when he was diagnosed with autism. Sarah describes that moment as confirmation of what she already knew in her heart and has said many of the emotions came later. Even still, the family faces a deeper emotional process. Sarah calls it the grieving over the loss of what she had once hoped for her son. Now the family is learning a new way to live that is not based on expectations. This is Samuel's story told from the very full heart of his mother Mrs. Sarah Broady. This story is beautiful, frustrating, inspiring, spiritual, and unfinished....
Sarah's Story, and Heart shared:
Autism is a pervasive developmental disorder that affects three domains of functionality. Social, communication and repetitive behaviors are the three domains. When all three of domains are affected to the point where it prohibits the child or person from functioning within a "normal" range, a trained doctor may diagnosis that person with autism. There is no definitive cause for autism, though there are many possibilities. Genetics are certainly a factor, especially if close family members have similar disorders that would give the child a predisposition to inheriting a developmental disorder, as are environmental circumstances, chemicals (i.e. mercury in vaccines), and other disorders such as Fragile X syndrome has been proven to cause autism as well.
The story of how we came to begin this journey of living with autism: Sam was different from birth. He not only had a different cry from his older brother (19 months difference), he had a totally different disposition. That was not atypical of second-born children. However, Sam had a variety of issues that greatly varied from his brother that began to cause concern. Although he reached most of his normal developmental milestones on time - rolling over, sitting up, and crawling, his language development was delayed, and he barely began walking "on time", at an old 15 months. His only form of communication was screaming and crying. Not just an annoying scream. This was a blood-curdling ear-piercing scream that I can only describe as a cross between a screech owl and a velociraptor from Jurassic Park. We had to play "100 questions" to figure out why he was screaming. He had always screamed like that, but at age 18 months, it was concerning. His behavior was volatile as well. When he threw a fit, he didn't just throw himself on the floor and cry until he got over it. He would bang his head repeatedly on our hard wood floors, or run to our thick wooden door, or use the ceramic kitchen tile floor for his head-banging session.
The pediatrician sent him for a hearing and language screening at 18 months. His hearing checked out fine, so that wasn't the issue. His language however, was at a 50% delay. This means that for a child who should have been on an 18 month old level, his language was actually on a 9 month old's level. No 9 month old says, "Mommy, I want juice." No wonder he couldn't tell us what he wanted! We began going through the state's First Steps program that provides in-home therapies and we started both speech and ABA (applied behavior analysis) therapy simultaneously right at age 2 in August of 2007. ABA has been a proven therapy for children with autism and other developmental disorders. I had a good friend who was an ABA therapist and she had helped me in a crisis situation with Sam one time and strongly encouraged me to begin therapy for his behavior right away.
He began to progress very well in therapy, but it was still a very difficult time. As time went on, my husband and I just felt like something was "off". He didn't seem to fit into our family. He imitated everything, and that was his play. While Daddy had wrestle time with the boys, Sam would just do whatever Ben did - it didn't seem to be he understood what he was doing; he simply imitated actions. He was obviously very smart, as he knew all of his alphabet, numbers 1-20, colors and shapes by age 2. I discovered that within the two days his big brother had started playing a Blue's Clues CD-ROM that showed letters, he had absorbed all the information! I could point to any random capital letter, and he knew what it was.
For our own ease of mind, and to "rule it out", we took Sam for testing in December '07 (four months after beginning therapy. He was 27 months old). After a two-hour testing session, including a full-blown questionnaire for me to answer as well, we received the official diagnosis of autism.
Our faith is the single most important aspect of living life - no matter what struggles we have in this life. If we have no faith, we have no hope. Without faith, I would be forced to view my child as someone who drew the short straw in life, always feeling sorry for him. Without faith, I would have no comfort that there is a plan for his life, designed by God Himself. Without faith, I would not understand that my child was created exactly the way that he is by the God of the universe, knit together in my womb, known by God before he was born.
Samuel was created for God's glory. That sounds so very strange, doesn't it? Why would God make a child with disabilities? The truth is, we are all created "disabled" because of sin. God made each and every person in His own image, and yet, we are born into sin. Disability is simply an outward manifestation of the sin that is in each of us. The fall (in the garden of Eden when sin entered the world) affects every single person, without partiality. Jesus Christ is the only one who can save a person from the consequence of their sin - death and eternal separation from God in hell. What does this have to do with autism? Well, honestly, struggling as a Christian mother to live a godly life, I am reminded daily of my own need for a Savior. It happens that Sam's autism brings that out the most in my life. I'm not always as compassionate as others would think a mother would be toward their child. I get angry at his outlandish behavior. I get frustrated because my own plans get interrupted far too often. I am inconvenienced by every yell, every cry, every request for help, every extra minute that is required of me that I don't feel like giving. All of that is nothing but sin. I am selfish, desiring only to sit on the couch and update my Facebook status, or read a book, or take a nap, because I am preferring myself over my children. It is not wrong to desire any of those things - but I am made extra-aware of them because they usually come at the cost of making my kids wait for me to feel like getting up to help them, or intervene in another argument, etc. For all of that, I need a Savior. I need Jesus to give me strength to do what I need to do, what He has given me to do as a mother. The fact that my son has this disability shows me that much more that he too, needs a Savior. He has no hope of living a life glorifying to God apart from believing in Jesus. His autism brings out his sinful nature in a very profound way. My son needs Jesus just as much as I do.
I need the hope that none of this is in vain. That God is using every moment to grow me, to show me my utter dependence on Him alone because I cannot do this on my own strength. In my own strength, I would have given up long ago and followed through on that fleeting thought that I can't do this, that I'm a horrible mother, and that maybe I should just leave. But God had grace on me. He gives the grace every day to handle whatever comes my way - from autism or otherwise. Here in the power of Christ I stand!
Sam has taught me very simply, compassion. When Sam was first diagnosed, I wasn't angry, as I read about many parents who feel that in the beginning. I had already been angry with him because I didn't understand why he was acting the way he did. I didn't understand what was making him different, why I couldn't connect with my child the way I was supposed to. Sam's autism diagnosis brought this incredible flood of compassion I never knew before. Maybe it was because in my mind, he was now justified for behaving as he was. There was a legitimate reason why he hurt himself so badly banging his head and screaming at the top of his lungs. I was able to finally show compassion toward him when I understood that reason. It changed our relationship. Now, he has grown to the point where I can tell when his autism is what's causing his frustrations or when his depraved little 4 year old self is acting out because he just wants what he wants when he wants it. He is disciplined in the appropriate ways for both scenarios. Although it's still very frustrating when he acts out, and Kyle and I get mad when all we wanted to do was have a nice family day out and Sam's screaming ruins the whole day, we are still able to understand that this is life with autism, and we have to go into "coping mode" at that point. We can still have compassion on him even in the midst of all that frustration, and handle it in a way that is hopefully pleasing to God.
A peek in to some of our everyday moments. First of all, the importance of spending individual time with each of our boys is crucial. I am able to spend a good amount of quality time with Ben and Josh (5 1/2 and a new 2) every day while Sam is at school. I home school Ben, so we spend lots of time together. Sometimes while Sam is at school, Josh will occasionally take a morning nap, and then Ben and I have our own time without distractions. He also doesn't take a regular afternoon nap, so we have time together while his brothers sleep. Sam is harder, simply because I can't leave the other two alone and take just Sam. We live in a very small cramped trailer (temporary until we sell our house), so there's no where to go really to be alone. We're always all in the same space. Kyle and I will use time to run errands and take just one of the older boys with us. Kyle likes to take Sam to the bus stop - it's about 10 minutes they have just the two of them first thing in the morning. At bedtime, Kyle always leads family devotions. They each sit and listen to the story, they get to each choose a song to sing, we play a bedtime game, and they each get their own special hugs and kisses. As an associate pastor, Kyle gets one day off during the week, so that's always family day. When Sam's in school, Kyle gets special time with them apart from Sam, then they get Daddy play time - boys only - later in the day. It's a difficult balance, and we are always trying to be aware of it and improve our time with them. Sam has not seemed to need a specified routine - always doing the same things in the same order every day. He does well in a structured setting where he knows what to expect in any given activity. I make great use of our oven timer. I can change anything in our day, as long as I give him information on what to expect, and a timer that dictates our schedule. For instance, when he comes home from school, he always has play time while I make lunch. I can't just say, "Lunch is ready! Come on!" and he comes running. But if I set the timer and tell him "Sam, when the timer goes off, it's time for lunch." He says "Okay", and when it goes off, he comes running. Same thing with bed. Sometimes, a bit frazzled, I just start calling for the kids to head to bed. But it throws him off because he was playing with his toys and wasn't prepared for bedtime. So I tell him again that it's bedtime when the timer goes off, and I'll set it for 1 minute. He doesn't care how long or how short the time is - he does what I told him to do when it goes off. I use this method for just about anything during our day - eating, bath time, bedtime, nap time, play time with certain toys, etc. He requests the timer now. It's a safety for him because he can trust it. The other children usually respond like this when Samuel is having difficulty expressing himself. Usually, it's an escalating event. Sam will try to take a toy from Ben, and Ben will calmly tell him that it's his toy and Sam has his own toy (as is our policy, because Sam will attempt to take his brothers toys away, no matter what they are). Sam will yell and start to whine, and Ben's voice raises as he insists Sam not take his toy. Josh, looking on, will start to whine and cry. If I don't intervene, or don't get there in time, it's a full-out yelling and crying war for all three boys. Sam will just begin to whine, cry and/or yell at anything he doesn't like, including if his brothers are upset about something. I've heard Josh yell - playing - then Sam yells back. Then Josh, then Sam, then it's no longer playing, it's become a screaming match. Very frustrating. Even more so when we're all in the van together. I've had to pull over before to get everyone calmed down. You know the phrase, "It takes money to make money"? Well, sometimes, it takes a screaming mommy to stop screaming children. :-)
A few things I would like the general public to know about our lives and the lives of other families like us is....People with autism - no matter their age - are people first. They themselves are not a disability. It's as simple as changing the way you refer to people with any disability. It grates my nerves to hear people refer to our family situation as "The Broady's have an autistic son", or "autistic kids", etc. That kind of phraseology puts the disability first and the person second. Change it around. I have a son who is affected by autism, or who has autism. "Autistic" is a defining word. Our children are not defined by their disabilities. They find their value and worth in God, not in a disability. I have a friend who's youngest son has Down's syndrome. He is not "Down's". It is a subtle difference, but as a parent of a child with autism, it is a big difference nonetheless. It makes a difference to me. Also they can be supportive and more helpful to families with special needs by being more sensitive to the needs of the parents for some down time. I am not nearly as affected by this as I know so many other parents are who have to care for their children with physical impairments around the clock. Many children with autism have sleeping issues. Either they fall asleep okay, but can't stay asleep, or they can't fall asleep at all. I know parents who will never have a normal night's sleep because they have to care for their child during the night too. Even nighttime doesn't give them a break. If there are siblings involved, that is even more challenging.
Offer to take the siblings for a play date for a part of the day, or a whole day, or even overnight (if you are close friends and have a trusting relationship with the family). Our biggest struggle is having to pack up all the kids wherever we go. How wonderful it is to just walk out of the house and get in the car without dealing with car seats, or forgetting toys and safety blankets, etc. Offer to come to the house and send the parents for a night out. Some churches have respite programs just for families of children with special needs. Your whole family can volunteer together (if you have middle school or older kids), and be servants to these families who come. The parents can drop off the kids, who are cared for by individual trained buddies, then go out for 3-4 hours for some much needed alone time. Some parents rarely get to have time to themselves because one of both of them work during the day, then they care for their children in the evening and sometimes through the night as well. Consider starting this kind of a ministry, as our church is now.
If you are financially able, find out if the family needs any particular equipment. For instance, we need a hammock chair swing and gymnastic parallel bars for Sam to use, for both calming down time (the swing does wonders for him and we don't have a play set), and improving strength. It helps strengthen his low muscle tone. There are websites that cater specifically to special needs. A simple Google search will give you tons of ideas. Some of these things are relatively inexpensive, while others are overwhelmingly expensive. Sometimes even the littlest cost is too much for families of kids with special needs. Find out if they have a specific need, then get a group of friends to go in together to buy it for them.
Many kids need special foods for their diet because of allergies. These special foods are NOT cheap. My Sammy can't drink cow's milk. He has to have rice or almond milk. It's almost 3 dollars for a quart, which can go in less than 2 days. His autism also causes a lot of issues with eating. There are only certain things he will eat. He truly will refuse food to the point of medical attention, so we HAVE to cater to what he will eat. Help a family stock up on certain food items for their child. Give gift certificates for groceries, for date nights, or just money to go towards therapy expenses. Families spend literally thousands of dollars each month for necessary therapies that are not covered by insurance or grants. A lot of families have taken out second mortgages, sold cars, moved to a smaller home - whatever they could do to pay for therapy. I could put Sam in an incredible ABA therapy program, as he used to be in, that would probably make a 100% difference in his behavior and eliminate his need for school... if only we could afford the $4000 it costs per month.
All in all, just be aware of their needs and be sensitive to the fact that it is embarrassing for them to ask for help. Sometimes it's embarrassing to be offered help. But we are grateful beyond measure. One more thing - parents of special needs children are regular people too. They need friends just as much, if not more, than anyone else. Don't be afraid to ask them about their family. I am grateful Jaime asked to write about our family. It shows a desire to understand them and to be involved in their lives. I want people to ask me how to talk with Sam when he shrieks in their face. It's okay to talk to parents about their children. But do NOT pity us. We are not ill-fortunate people to feel sorry for. Have compassion on our situation, yes. Show us love.
Kyle and I have made great strides together in viewing and approaching our children with love, compassion and grace. We pray for wisdom and discernment to know how to handle every situation that comes our way, and how to teach these principles to our children as well. It brings great joy to my heart to hear Benjamin exclaim how proud he is of his brother when he sees Sam do something. He finds pictures or projects Sam made at school and tells Sam how proud he is that he did that and gives him a big hug. I remember just about a month ago when Samuel told me he loved me for the first time - spontaneously, without imitating me. It's so often taken for granted that your child loves you. But when he never tells you on his own, you sometimes wonder as a mother. It made me cry when he told me. Another accomplishment I guess, would be all the boys together, growing and learning how to live with each other, good times and bad, and being sensitive to Sam's needs. We glory in the little victories every day, which will eventually add up to a lifetime of worthy accomplishments. Our hope and prayer is that God is glorified in each of these celebrations.
Every day brings new things - sometimes old things in new ways. There are certainly times of anger, frustration, and the "what-if game". But there are moments of joy, of celebration, of this life God has entrusted to us: a child He made in His own image. I pray my story can be an encouragement to other parents going through the same things.
Sarah's Story, and Heart shared:
Autism is a pervasive developmental disorder that affects three domains of functionality. Social, communication and repetitive behaviors are the three domains. When all three of domains are affected to the point where it prohibits the child or person from functioning within a "normal" range, a trained doctor may diagnosis that person with autism. There is no definitive cause for autism, though there are many possibilities. Genetics are certainly a factor, especially if close family members have similar disorders that would give the child a predisposition to inheriting a developmental disorder, as are environmental circumstances, chemicals (i.e. mercury in vaccines), and other disorders such as Fragile X syndrome has been proven to cause autism as well.
The story of how we came to begin this journey of living with autism: Sam was different from birth. He not only had a different cry from his older brother (19 months difference), he had a totally different disposition. That was not atypical of second-born children. However, Sam had a variety of issues that greatly varied from his brother that began to cause concern. Although he reached most of his normal developmental milestones on time - rolling over, sitting up, and crawling, his language development was delayed, and he barely began walking "on time", at an old 15 months. His only form of communication was screaming and crying. Not just an annoying scream. This was a blood-curdling ear-piercing scream that I can only describe as a cross between a screech owl and a velociraptor from Jurassic Park. We had to play "100 questions" to figure out why he was screaming. He had always screamed like that, but at age 18 months, it was concerning. His behavior was volatile as well. When he threw a fit, he didn't just throw himself on the floor and cry until he got over it. He would bang his head repeatedly on our hard wood floors, or run to our thick wooden door, or use the ceramic kitchen tile floor for his head-banging session.
The pediatrician sent him for a hearing and language screening at 18 months. His hearing checked out fine, so that wasn't the issue. His language however, was at a 50% delay. This means that for a child who should have been on an 18 month old level, his language was actually on a 9 month old's level. No 9 month old says, "Mommy, I want juice." No wonder he couldn't tell us what he wanted! We began going through the state's First Steps program that provides in-home therapies and we started both speech and ABA (applied behavior analysis) therapy simultaneously right at age 2 in August of 2007. ABA has been a proven therapy for children with autism and other developmental disorders. I had a good friend who was an ABA therapist and she had helped me in a crisis situation with Sam one time and strongly encouraged me to begin therapy for his behavior right away.
He began to progress very well in therapy, but it was still a very difficult time. As time went on, my husband and I just felt like something was "off". He didn't seem to fit into our family. He imitated everything, and that was his play. While Daddy had wrestle time with the boys, Sam would just do whatever Ben did - it didn't seem to be he understood what he was doing; he simply imitated actions. He was obviously very smart, as he knew all of his alphabet, numbers 1-20, colors and shapes by age 2. I discovered that within the two days his big brother had started playing a Blue's Clues CD-ROM that showed letters, he had absorbed all the information! I could point to any random capital letter, and he knew what it was.
For our own ease of mind, and to "rule it out", we took Sam for testing in December '07 (four months after beginning therapy. He was 27 months old). After a two-hour testing session, including a full-blown questionnaire for me to answer as well, we received the official diagnosis of autism.
Our faith is the single most important aspect of living life - no matter what struggles we have in this life. If we have no faith, we have no hope. Without faith, I would be forced to view my child as someone who drew the short straw in life, always feeling sorry for him. Without faith, I would have no comfort that there is a plan for his life, designed by God Himself. Without faith, I would not understand that my child was created exactly the way that he is by the God of the universe, knit together in my womb, known by God before he was born.
Samuel was created for God's glory. That sounds so very strange, doesn't it? Why would God make a child with disabilities? The truth is, we are all created "disabled" because of sin. God made each and every person in His own image, and yet, we are born into sin. Disability is simply an outward manifestation of the sin that is in each of us. The fall (in the garden of Eden when sin entered the world) affects every single person, without partiality. Jesus Christ is the only one who can save a person from the consequence of their sin - death and eternal separation from God in hell. What does this have to do with autism? Well, honestly, struggling as a Christian mother to live a godly life, I am reminded daily of my own need for a Savior. It happens that Sam's autism brings that out the most in my life. I'm not always as compassionate as others would think a mother would be toward their child. I get angry at his outlandish behavior. I get frustrated because my own plans get interrupted far too often. I am inconvenienced by every yell, every cry, every request for help, every extra minute that is required of me that I don't feel like giving. All of that is nothing but sin. I am selfish, desiring only to sit on the couch and update my Facebook status, or read a book, or take a nap, because I am preferring myself over my children. It is not wrong to desire any of those things - but I am made extra-aware of them because they usually come at the cost of making my kids wait for me to feel like getting up to help them, or intervene in another argument, etc. For all of that, I need a Savior. I need Jesus to give me strength to do what I need to do, what He has given me to do as a mother. The fact that my son has this disability shows me that much more that he too, needs a Savior. He has no hope of living a life glorifying to God apart from believing in Jesus. His autism brings out his sinful nature in a very profound way. My son needs Jesus just as much as I do.
I need the hope that none of this is in vain. That God is using every moment to grow me, to show me my utter dependence on Him alone because I cannot do this on my own strength. In my own strength, I would have given up long ago and followed through on that fleeting thought that I can't do this, that I'm a horrible mother, and that maybe I should just leave. But God had grace on me. He gives the grace every day to handle whatever comes my way - from autism or otherwise. Here in the power of Christ I stand!
Sam has taught me very simply, compassion. When Sam was first diagnosed, I wasn't angry, as I read about many parents who feel that in the beginning. I had already been angry with him because I didn't understand why he was acting the way he did. I didn't understand what was making him different, why I couldn't connect with my child the way I was supposed to. Sam's autism diagnosis brought this incredible flood of compassion I never knew before. Maybe it was because in my mind, he was now justified for behaving as he was. There was a legitimate reason why he hurt himself so badly banging his head and screaming at the top of his lungs. I was able to finally show compassion toward him when I understood that reason. It changed our relationship. Now, he has grown to the point where I can tell when his autism is what's causing his frustrations or when his depraved little 4 year old self is acting out because he just wants what he wants when he wants it. He is disciplined in the appropriate ways for both scenarios. Although it's still very frustrating when he acts out, and Kyle and I get mad when all we wanted to do was have a nice family day out and Sam's screaming ruins the whole day, we are still able to understand that this is life with autism, and we have to go into "coping mode" at that point. We can still have compassion on him even in the midst of all that frustration, and handle it in a way that is hopefully pleasing to God.
A peek in to some of our everyday moments. First of all, the importance of spending individual time with each of our boys is crucial. I am able to spend a good amount of quality time with Ben and Josh (5 1/2 and a new 2) every day while Sam is at school. I home school Ben, so we spend lots of time together. Sometimes while Sam is at school, Josh will occasionally take a morning nap, and then Ben and I have our own time without distractions. He also doesn't take a regular afternoon nap, so we have time together while his brothers sleep. Sam is harder, simply because I can't leave the other two alone and take just Sam. We live in a very small cramped trailer (temporary until we sell our house), so there's no where to go really to be alone. We're always all in the same space. Kyle and I will use time to run errands and take just one of the older boys with us. Kyle likes to take Sam to the bus stop - it's about 10 minutes they have just the two of them first thing in the morning. At bedtime, Kyle always leads family devotions. They each sit and listen to the story, they get to each choose a song to sing, we play a bedtime game, and they each get their own special hugs and kisses. As an associate pastor, Kyle gets one day off during the week, so that's always family day. When Sam's in school, Kyle gets special time with them apart from Sam, then they get Daddy play time - boys only - later in the day. It's a difficult balance, and we are always trying to be aware of it and improve our time with them. Sam has not seemed to need a specified routine - always doing the same things in the same order every day. He does well in a structured setting where he knows what to expect in any given activity. I make great use of our oven timer. I can change anything in our day, as long as I give him information on what to expect, and a timer that dictates our schedule. For instance, when he comes home from school, he always has play time while I make lunch. I can't just say, "Lunch is ready! Come on!" and he comes running. But if I set the timer and tell him "Sam, when the timer goes off, it's time for lunch." He says "Okay", and when it goes off, he comes running. Same thing with bed. Sometimes, a bit frazzled, I just start calling for the kids to head to bed. But it throws him off because he was playing with his toys and wasn't prepared for bedtime. So I tell him again that it's bedtime when the timer goes off, and I'll set it for 1 minute. He doesn't care how long or how short the time is - he does what I told him to do when it goes off. I use this method for just about anything during our day - eating, bath time, bedtime, nap time, play time with certain toys, etc. He requests the timer now. It's a safety for him because he can trust it. The other children usually respond like this when Samuel is having difficulty expressing himself. Usually, it's an escalating event. Sam will try to take a toy from Ben, and Ben will calmly tell him that it's his toy and Sam has his own toy (as is our policy, because Sam will attempt to take his brothers toys away, no matter what they are). Sam will yell and start to whine, and Ben's voice raises as he insists Sam not take his toy. Josh, looking on, will start to whine and cry. If I don't intervene, or don't get there in time, it's a full-out yelling and crying war for all three boys. Sam will just begin to whine, cry and/or yell at anything he doesn't like, including if his brothers are upset about something. I've heard Josh yell - playing - then Sam yells back. Then Josh, then Sam, then it's no longer playing, it's become a screaming match. Very frustrating. Even more so when we're all in the van together. I've had to pull over before to get everyone calmed down. You know the phrase, "It takes money to make money"? Well, sometimes, it takes a screaming mommy to stop screaming children. :-)
A few things I would like the general public to know about our lives and the lives of other families like us is....People with autism - no matter their age - are people first. They themselves are not a disability. It's as simple as changing the way you refer to people with any disability. It grates my nerves to hear people refer to our family situation as "The Broady's have an autistic son", or "autistic kids", etc. That kind of phraseology puts the disability first and the person second. Change it around. I have a son who is affected by autism, or who has autism. "Autistic" is a defining word. Our children are not defined by their disabilities. They find their value and worth in God, not in a disability. I have a friend who's youngest son has Down's syndrome. He is not "Down's". It is a subtle difference, but as a parent of a child with autism, it is a big difference nonetheless. It makes a difference to me. Also they can be supportive and more helpful to families with special needs by being more sensitive to the needs of the parents for some down time. I am not nearly as affected by this as I know so many other parents are who have to care for their children with physical impairments around the clock. Many children with autism have sleeping issues. Either they fall asleep okay, but can't stay asleep, or they can't fall asleep at all. I know parents who will never have a normal night's sleep because they have to care for their child during the night too. Even nighttime doesn't give them a break. If there are siblings involved, that is even more challenging.
Offer to take the siblings for a play date for a part of the day, or a whole day, or even overnight (if you are close friends and have a trusting relationship with the family). Our biggest struggle is having to pack up all the kids wherever we go. How wonderful it is to just walk out of the house and get in the car without dealing with car seats, or forgetting toys and safety blankets, etc. Offer to come to the house and send the parents for a night out. Some churches have respite programs just for families of children with special needs. Your whole family can volunteer together (if you have middle school or older kids), and be servants to these families who come. The parents can drop off the kids, who are cared for by individual trained buddies, then go out for 3-4 hours for some much needed alone time. Some parents rarely get to have time to themselves because one of both of them work during the day, then they care for their children in the evening and sometimes through the night as well. Consider starting this kind of a ministry, as our church is now.
If you are financially able, find out if the family needs any particular equipment. For instance, we need a hammock chair swing and gymnastic parallel bars for Sam to use, for both calming down time (the swing does wonders for him and we don't have a play set), and improving strength. It helps strengthen his low muscle tone. There are websites that cater specifically to special needs. A simple Google search will give you tons of ideas. Some of these things are relatively inexpensive, while others are overwhelmingly expensive. Sometimes even the littlest cost is too much for families of kids with special needs. Find out if they have a specific need, then get a group of friends to go in together to buy it for them.
Many kids need special foods for their diet because of allergies. These special foods are NOT cheap. My Sammy can't drink cow's milk. He has to have rice or almond milk. It's almost 3 dollars for a quart, which can go in less than 2 days. His autism also causes a lot of issues with eating. There are only certain things he will eat. He truly will refuse food to the point of medical attention, so we HAVE to cater to what he will eat. Help a family stock up on certain food items for their child. Give gift certificates for groceries, for date nights, or just money to go towards therapy expenses. Families spend literally thousands of dollars each month for necessary therapies that are not covered by insurance or grants. A lot of families have taken out second mortgages, sold cars, moved to a smaller home - whatever they could do to pay for therapy. I could put Sam in an incredible ABA therapy program, as he used to be in, that would probably make a 100% difference in his behavior and eliminate his need for school... if only we could afford the $4000 it costs per month.
All in all, just be aware of their needs and be sensitive to the fact that it is embarrassing for them to ask for help. Sometimes it's embarrassing to be offered help. But we are grateful beyond measure. One more thing - parents of special needs children are regular people too. They need friends just as much, if not more, than anyone else. Don't be afraid to ask them about their family. I am grateful Jaime asked to write about our family. It shows a desire to understand them and to be involved in their lives. I want people to ask me how to talk with Sam when he shrieks in their face. It's okay to talk to parents about their children. But do NOT pity us. We are not ill-fortunate people to feel sorry for. Have compassion on our situation, yes. Show us love.
Kyle and I have made great strides together in viewing and approaching our children with love, compassion and grace. We pray for wisdom and discernment to know how to handle every situation that comes our way, and how to teach these principles to our children as well. It brings great joy to my heart to hear Benjamin exclaim how proud he is of his brother when he sees Sam do something. He finds pictures or projects Sam made at school and tells Sam how proud he is that he did that and gives him a big hug. I remember just about a month ago when Samuel told me he loved me for the first time - spontaneously, without imitating me. It's so often taken for granted that your child loves you. But when he never tells you on his own, you sometimes wonder as a mother. It made me cry when he told me. Another accomplishment I guess, would be all the boys together, growing and learning how to live with each other, good times and bad, and being sensitive to Sam's needs. We glory in the little victories every day, which will eventually add up to a lifetime of worthy accomplishments. Our hope and prayer is that God is glorified in each of these celebrations.
Every day brings new things - sometimes old things in new ways. There are certainly times of anger, frustration, and the "what-if game". But there are moments of joy, of celebration, of this life God has entrusted to us: a child He made in His own image. I pray my story can be an encouragement to other parents going through the same things.
Thursday, October 22, 2009
Life with Miracles
At first glance Max Brooks looks like any other sweet little baby boy. With twinkling eyes, and chubby little cheeks dressed in matching pajamas just like protective big brother Clay. Max was born with a rare, severe form of sleep apnea called hypoventilation. This has resulted in several surgeries and now leaves young Max with the constant presence of a trach. So soon after his birth the Brooks family realized that they had some decisions to make and took to heart that it takes a village to raise a child. They made the decision to move their family from Sevierville, TN back to Cookeville, TN in order to be closer to family, which provided a much needed and appreciated support system. The Brooks family has been showered with love, prayers, and helpful hands. This is a family of fighters, believers, and constant prayers. While the road ahead maybe a gravel one, little Max is already reaching milestones, and proving miracles are to be believed in!!! I want to thank Max's Mother, Dusti, and her family for allowing me to share their story with my readers.
Walking through Your Tragedy like it’s a Comedy
By: Dusti Brooks
The Celtic Christians had a name for the Holy Spirit. They called him the Wild Goose. The name hints to the mysterious nature of the Holy Spirit, much like a wild goose. The Spirit of God cannot be tracked or tamed. An element of Danger and an air of unpredictability surrounds Him.
I understand that a wild goose chase typically refers to a purposeless endeavor without a defined destination. But chasing the Wild Goose is different. The promptings of the Holy Spirit can sometimes seem pretty pointless, but rest assured, God’s working His plan. And if you chase the wild goose, He will take you places you never could have imagined going, and by paths you never knew existed.
I’ve had a few tragic situations in my life that turned to laughter. Such as the time when I picked up an electric drill and began playing with it while my little two year old sister was close by. I got her hair caught in it and the only solution at the time was to yank it out, but with that left a perfectly round spot in the middle of her head. It was tragic. Even then she had great hair. We can laugh about it now but then not so much.
Another time was when we got pregnant with our first son Clay. We were not planning on having kids anytime soon and I was devastated. I was still in college. I had a lot planned and kids were not in the picture. I thought this baby had ruined my life. I was scared I would resent him for upsetting my plans. To me, at the time, it was tragic. I wanted to get a good job. I never wanted to be a stay at home mom. Then baby Clay came and has been the one to wake me up with a smile on my face most everyday!
So then we had a not so tragic beginning with our second pregnancy. We tried for 6 months and found out Jan 18th we were expecting!!! The timing felt perfect. Clay was becoming more independent. Daniel had a good job. We were thrilled. Then we found out it was another boy!! We wanted Clay to have a buddy.
I knew the day I was going to have little Max. I had my bag packed and Max’s diaper bag ready with his sweet little coming home outfit. I got Clay ready. I picked up Daniel from work. Dropped Clay off at Staci’s, and off we went to the Dr’s office with no labor pains at all, but I just knew. 13 hours later, here came little Max!!
And the room was silent. Daniel didn’t move from my bedside. I asked him to get some pictures of Max and he quickly returned. I kept asking, “Is he ok?” “Is everything alright?”. No response. I was then given some morphine and it got a little hazy after that. When I woke up my dad had just walked in the room, very solemn, with his arms crossed. He said nothing. Without hesitation I asked, “He died didn’t he?” Dad jumped back and said “Oh no, no, no, but there is something wrong. The doctor is on his way to talk to you.” It was more than tragic. I was devastated. I couldn’t even hold him. They wheeled him in a little isolate where I could only stick my hands through and touch him. He did not want to breathe on his own. I was confident nothing big was wrong. I loved God. I had been serving Him since I was 15. We were youth pastors for crying out loud. We had to be covered from crazy things like this.
So I stood strong…until day 14 came in the NICU. We were suppose to go home at day 7 they had said but still we had no answers and a baby on life support. Then day 21 came and he was tested for a rare genetic syndrome that is simpler said as a rare form of sleep apnea. I knew God was just going to heal him so I tried not to worry. Day 26 Max had tracheostomy surgery where they placed a trach in his throat so he would not have to intubated and sedated. At that time he had been sleeping with drug assistance for 26 days. We could barley touch him. When we did it would cause him to stir which would cause his intubation tube to move. That would gag him and cause him to throw up.
But with no sedation our Miracle Max began to shine! Everyday with Max was different. We had good days and hard days. But one thing is remained the same, Whose Name we called on. Everyday we cried out to the God we knew saw our every tear, heard our every frustration and listened by being all we needed. I never felt abandoned. He was ever present and I knew He was the giver of life.
Max began to do so well we decided to try him off the ventilator. Before this he was 24 hour vent dependent. He went 7 hours the first day, 10 the next, 13 after that and his labs were coming back just beautiful. My prayer began to change to what Max needed that day, not a generic prayer of “God please heal my son.” Max had specific needs so that’s how I began to pray.
Psalm 23:2 says “He lead me beside still waters.” He leads me. God isn’t behind me yelling GO! He is ahead of me bidding, come! He is in front of me clearing the path, cutting the brush, showing the way. Just before the curve he says turn here. Prior to the rise, He motions step up here. Standing next to the rocks he warns, watch your step here. He leads us. We will find grace to help us when we need it Hebrews 4:16. He places himself between you and the need.
And I began to not be moved. Because I was not longer leading me anymore. My Sheppard was. But sometimes it takes a shipwreck for God’s plans to succeed. So how we handle these shipwrecks determine whether our lives become a tragedy or a comedy. We can not always control what happens but we can control our response. You still get to choose your attitude. The ending to your story is entirely contingent on whether you turn to Jesus. If you don’t, the tragedy stays a tragedy, but if you do, the tragedy ends and the fairy tale begin. Not to leave out where Jesus said in this world you will have trouble. Bad things happen to good people, but when you give Jesus complete control over your life, He begins writing His story through your life.
Soon after Max’s tracheostomy surgery, he had to have a feeding tube put it because he was aspirating. Six months later it was removed. He is now only on the vent at naptime and nighttime!! Dr’s said he would never talk. He says dada, bubba, and bye bye! He has hit every developmental milestone. Trying to walk at the moment. The doctors have exciting plans for Max’s future.
So what are we doing now? RUNNING!!! For our life, for Clay’s life, for Max’s life. Why? Because we hear Him calling Come, Believing everyday that our wild goose chase is not pointless but strategically mapped out into the story God has written out for our lives!
If I could be any encouragement to where you are in life, I would say trust the leading of the Holy Spirit. Sometimes it may feel pointless, but He knows what he is doing. Sometimes it may take longer than expected, but the last sentence of your story has yet to be written so have hope and be confident in the author of your life!
Walking through Your Tragedy like it’s a Comedy
By: Dusti Brooks
The Celtic Christians had a name for the Holy Spirit. They called him the Wild Goose. The name hints to the mysterious nature of the Holy Spirit, much like a wild goose. The Spirit of God cannot be tracked or tamed. An element of Danger and an air of unpredictability surrounds Him.
I understand that a wild goose chase typically refers to a purposeless endeavor without a defined destination. But chasing the Wild Goose is different. The promptings of the Holy Spirit can sometimes seem pretty pointless, but rest assured, God’s working His plan. And if you chase the wild goose, He will take you places you never could have imagined going, and by paths you never knew existed.
I’ve had a few tragic situations in my life that turned to laughter. Such as the time when I picked up an electric drill and began playing with it while my little two year old sister was close by. I got her hair caught in it and the only solution at the time was to yank it out, but with that left a perfectly round spot in the middle of her head. It was tragic. Even then she had great hair. We can laugh about it now but then not so much.
Another time was when we got pregnant with our first son Clay. We were not planning on having kids anytime soon and I was devastated. I was still in college. I had a lot planned and kids were not in the picture. I thought this baby had ruined my life. I was scared I would resent him for upsetting my plans. To me, at the time, it was tragic. I wanted to get a good job. I never wanted to be a stay at home mom. Then baby Clay came and has been the one to wake me up with a smile on my face most everyday!
So then we had a not so tragic beginning with our second pregnancy. We tried for 6 months and found out Jan 18th we were expecting!!! The timing felt perfect. Clay was becoming more independent. Daniel had a good job. We were thrilled. Then we found out it was another boy!! We wanted Clay to have a buddy.
I knew the day I was going to have little Max. I had my bag packed and Max’s diaper bag ready with his sweet little coming home outfit. I got Clay ready. I picked up Daniel from work. Dropped Clay off at Staci’s, and off we went to the Dr’s office with no labor pains at all, but I just knew. 13 hours later, here came little Max!!
And the room was silent. Daniel didn’t move from my bedside. I asked him to get some pictures of Max and he quickly returned. I kept asking, “Is he ok?” “Is everything alright?”. No response. I was then given some morphine and it got a little hazy after that. When I woke up my dad had just walked in the room, very solemn, with his arms crossed. He said nothing. Without hesitation I asked, “He died didn’t he?” Dad jumped back and said “Oh no, no, no, but there is something wrong. The doctor is on his way to talk to you.” It was more than tragic. I was devastated. I couldn’t even hold him. They wheeled him in a little isolate where I could only stick my hands through and touch him. He did not want to breathe on his own. I was confident nothing big was wrong. I loved God. I had been serving Him since I was 15. We were youth pastors for crying out loud. We had to be covered from crazy things like this.
So I stood strong…until day 14 came in the NICU. We were suppose to go home at day 7 they had said but still we had no answers and a baby on life support. Then day 21 came and he was tested for a rare genetic syndrome that is simpler said as a rare form of sleep apnea. I knew God was just going to heal him so I tried not to worry. Day 26 Max had tracheostomy surgery where they placed a trach in his throat so he would not have to intubated and sedated. At that time he had been sleeping with drug assistance for 26 days. We could barley touch him. When we did it would cause him to stir which would cause his intubation tube to move. That would gag him and cause him to throw up.
But with no sedation our Miracle Max began to shine! Everyday with Max was different. We had good days and hard days. But one thing is remained the same, Whose Name we called on. Everyday we cried out to the God we knew saw our every tear, heard our every frustration and listened by being all we needed. I never felt abandoned. He was ever present and I knew He was the giver of life.
Max began to do so well we decided to try him off the ventilator. Before this he was 24 hour vent dependent. He went 7 hours the first day, 10 the next, 13 after that and his labs were coming back just beautiful. My prayer began to change to what Max needed that day, not a generic prayer of “God please heal my son.” Max had specific needs so that’s how I began to pray.
Psalm 23:2 says “He lead me beside still waters.” He leads me. God isn’t behind me yelling GO! He is ahead of me bidding, come! He is in front of me clearing the path, cutting the brush, showing the way. Just before the curve he says turn here. Prior to the rise, He motions step up here. Standing next to the rocks he warns, watch your step here. He leads us. We will find grace to help us when we need it Hebrews 4:16. He places himself between you and the need.
And I began to not be moved. Because I was not longer leading me anymore. My Sheppard was. But sometimes it takes a shipwreck for God’s plans to succeed. So how we handle these shipwrecks determine whether our lives become a tragedy or a comedy. We can not always control what happens but we can control our response. You still get to choose your attitude. The ending to your story is entirely contingent on whether you turn to Jesus. If you don’t, the tragedy stays a tragedy, but if you do, the tragedy ends and the fairy tale begin. Not to leave out where Jesus said in this world you will have trouble. Bad things happen to good people, but when you give Jesus complete control over your life, He begins writing His story through your life.
Soon after Max’s tracheostomy surgery, he had to have a feeding tube put it because he was aspirating. Six months later it was removed. He is now only on the vent at naptime and nighttime!! Dr’s said he would never talk. He says dada, bubba, and bye bye! He has hit every developmental milestone. Trying to walk at the moment. The doctors have exciting plans for Max’s future.
So what are we doing now? RUNNING!!! For our life, for Clay’s life, for Max’s life. Why? Because we hear Him calling Come, Believing everyday that our wild goose chase is not pointless but strategically mapped out into the story God has written out for our lives!
If I could be any encouragement to where you are in life, I would say trust the leading of the Holy Spirit. Sometimes it may feel pointless, but He knows what he is doing. Sometimes it may take longer than expected, but the last sentence of your story has yet to be written so have hope and be confident in the author of your life!
Tuesday, October 20, 2009
Beyond the Disabilities
I have ask two very special families to share their struggles, hopes, joy, blessings, needs, and dreams with us. For the Brooks family their lives where turned upside down when sweet baby Max was born with a rare syndrome called hypoventilation a severe form of sleep apnea. Then there is the Broady family, a family of five learning together how to view the blessings of child with autism, and leave the struggles and meltdowns in the dust. Both families have be kind enough to talk with me and share their very personal stories with me. They have shared heart breaking moments of struggles, and the hopes they clinch to daily. As these families face obstacles they are uniting in prayer, and finding their way past dilemmas to build strong families full of inspiration. Teaching us that love builds walls for us to climb over our problems. Not be stuck behind lingering hopelessly in the darkness. I must say thank you to these two brave families who have helped us look beyond the disabilities and it to the precious faces of these children.
Join us this week right here on Inside My Head for insights, and advice from two truly remarkable, strong warriors of Christ, as they share their heartwarming stories with us.
"A true friend knows your weaknesses but shows you your strenghs; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities."
— William Arthur Ward
A few helpful links are listed below:
Autism Speaks
What is Hypoventilation
Autism Society of America
Children's Disabilities Information and National Support
Join us this week right here on Inside My Head for insights, and advice from two truly remarkable, strong warriors of Christ, as they share their heartwarming stories with us.
— William Arthur Ward
A few helpful links are listed below:
Autism Speaks
What is Hypoventilation
Autism Society of America
Children's Disabilities Information and National Support
August 1988
It's August 17th 1988, and I am going to my second day of the 1st grade. My teacher is Mrs. Swallows, and today my Mom is writing a letter addressed to me. A letter that will not effect my life until I am around the same age she is when writing it. She tells me in the letter how she wants the best for my kid brother and I, and how she wants me to know that I am just as smart not smarter, and just as pretty not prettier than the rest of the people in this world. She writes the letter because she is sad I am growing up to fast, and how letting go is the toughest part of parenting. Words I would have never understood as a six year old child, but now things are a little different. I am no longer six, and those words bounce their way off the paper, and into my soul. The soul that is now 27 years old, and mother of three little boys that also seem to be growing up way to fast. How realizing today that they are not always going to be small children, but I will always be their proud Mother. Also realizing that words written over 21 years ago by my Mother are teaching me life lessons, and my filling heart with joy. She was proud of me then even when I was 6, and she loved and thought enough about it to write it down for me to have now. Here is to my Mom for loving me, for teaching me, for putting up with me even still, and for the hardest part letting me go! I am proud to be your daughter and your friend! I love you Mom!
Sunday, October 18, 2009
From the Hearts of Billie Ruth Buccigrossi's Grandchildren
I joined my family this past weekend in Akron Ohio to celebrate the life of my Grandmother Billie Ruth Buccigrossi who passed away on October 14, 2009. As I sat there with my family feeling almost helpless, as her daughters scattered making arrangements, answering phone calls, and filtering pictures. It was weird standing in her home, and not hearing her laughter fill the rooms around me. I let myself get lost in the memories of my 8 year old self when elephants filled the house, the carpet in the breeze way was blue, and babies where gave their baths in the big sink in the laundry room, kickball was played in the empty lot, and rolling down what at the time seem like such a big hill in the backyard. I can almost hear my Grandfather calling me bug-a-boo, but those years of innocents, and child's play have long been washed away. I am left here with the understanding of how very real it is to say goodbye. So in this weekend her family and friends have come together to celebrate the life of Billie R. Buccigrossi mother, wife, sister, friend, and to us 15 she was Grandma. She loved us all in her own special way. The love was unique to us as our own individual colorful personalities. We have so many memories of her that dance in our hearts. Today I would like to share with some of those very personal thoughts and memories from the hearts of her grandchildren, and give you a glimpse into the incredibly lucky world of being born one of Billie Ruth's grandchildren!
My own memories of my Grandmother start with her hugs for such a petite woman her hugs where strong. Sometimes I wasn't sure if I was going to be able to breathe again, but for some reason I just couldn't get enough of those hugs. My grandmother also taught me to write letters that came from my heart. I was even lucky enough to receive the a letter from her with the story of her falling in love with Grandpa. A story I am so glad she shared with me. Even being miles away from her she still found a way to connect with me, and love on me!
Breanna
I remember Grandma Billie as the sweetest thing that would always tell you how pretty you were even if you just rolled out of the bed. She was the first person to give a compliment and stick up the grand-kids when we were in in trouble because we were "good kids" I remember go-cart Sundays when one of us would wreck and Papa would get mad she would say "Frankie leave them, alone they aren't hurting anything."
Grandma had a love for life and children she never cared to sit and listen to a story she had heard a hundred times. She will be truly missed by all.
Mandy
Would also like everyone to know that no one will ever be able to make red potato salad the way grandma did.
Jessie
I have so many great memories. Monday, Wednesday, and Fridays were my favorite days. I would bring movies to Grandmas and we would sit together and watch movies and I would make her lunch. We spent so much time together and I enjoyed every minute. Her favorite movie was Happy Feet.... We watched it so many times, and it never got old. I brought over The Sisterhood Of The Traveling Pants and she loved it. I was sitting at home and the phone rang. It was grandma calling to tell me Sisterhood 2 was coming out and she wanted to go see it. So I got to her house one Friday and said okay lets go! We drove over to Lake cinemas and got some popcorn and sat through the movie. She was sobbing, and when girls where looking at her she said " I am old, I'm allowed to cry". We had some truly great times, and I'll cherish all of them for the rest of my life.
Valerie
There is not one fond memory of my grandmother and I, but an entire lifetime of memories that fill my heart. She was a person who never judged me despite the many mistakes I made. She always supported the decisions I made for myself. I remember playing hooky during the school year when I was little just so I could stay home with grandma all day. We would eat wonderful food like chicken livers and fried potatoes while we watched our channel five soap operas. To this day we could tell each other what was happening on those daily shows even if we had missed a few here and there. Grandma was part of my everyday life and it is going to be hard to knowing that piece of my day will be altered now that she is resting in heaven. I feel grandma was very proud of the person I have become, including the mother I am to her great granddaughter Lucielle. I am heartbroken to no longer have her in my life but I am thankful to now have such a wonderful angel watch over my family and I. With all my love to grandma; forever and always
Kirsten
I'm sure that no one has ever had better steaks than the $17 steaks we had from Giant Eagle, the ones that remind me of one of my fondest memories of Grandma Billie.
To celebrate one of our first meals official meals in the new house that dad and papa built, my dad gave me his debit card and told me to go to Giant Eagle and buy some steak for everyone so would could cook them on the grill. I did what I was told, but my parents weren't to happy when I returned and saw the receipt for the $17 dollar steaks. "Oh take it easy!" is probably what Papa said followed by Grandma Billie of course reminding my dad they like their steaks well, well, well, well, done....."NO PINK!" We all sat down for dinner and everyone took their first bite of steak... Well that bite began a running joke that has continued for the past 12 years. Both Papa and Grandma could not stop raving about the best steaks they have ever had. Every single bite, Grandma would say that she couldn't believe the steaks were from Giant Eagle....She's never had a better steak. She didn't care how much they cost....I heard about the steaks all night. After that night every dinner Grandma had involving a steak was automatically compared to my Giant Eagle Steaks. She would say we went to so-and-so for dinner last night they had steaks, but they were nothing compared to those ones.... "We had steak at Lonestar last week and I almost sent it back and went to Giant Eagle!" There has not been a steak since that night worth mentioning
I will never forget the dinner with Papa and Grandma in which we ate "The World's Best Steaks"
Lindsey
So many years that we have spent making memories. Spending summers in Ohio, going to get ice cream, going to the park chasing squirrels. Today is a day you never want to imagine would come, but knowing the strong Christian woman my Grandmother was. I know that today she wouldn't want us crying tears of sadness, but tears of joy. No matter how much older I got she always called me Grandma's Baby, and that I will forever be. Though we were miles apart she was only a phone call away. I hope that one day I can say I was half the woman she was!
Samantha
As I remember my Grandma Billie today I remember a sweet caring woman, and even miles apart I was felt so close. Running to the phone on Monday mornings to get to it first so I could talk before mom did.
Summer trips to stay with grandma where my favorite. Baseball games, painting each others finger nails, and going to the produce store. Is what I will remember. The trouble me and Allen would get into never mattered to her. She would yell at us and let us go. One thing through all the trouble we would cause, never did she let anyone think we done anything wrong. She would take up for us even when she knew we were guilty. She was there when I graduated, got married, and had my first baby. There isn't hardly a family memory that I have that she isn't in. Today as I say goodbye to my redhead Grandma I can't help but think about the one thing she would always tell me "Never go to sleep with saying I LOVE YOU". So today I say I love you Grandma Billie!!!
The Ending:
I am going to end our trip down memory lane with and excerpt from her grandson Allen's blog Brillance or Madness. Allen who is in the peace corp in Africa and was unable to join the family in Akron, Ohio, but we all know his heart was with us. Here is what he had to say in loving memory of his beloved Grandmother
For Grandma
I would like to take a moment to remember my grandmother, Billie R. Buccigrossi. She passed away October 14, 2009. I know that she is happy with the life she was given. She lived happily with my grandfather, Frank, and her children, grand children, and great grand children. She lived a good life and always wanted the best for everyone. She loves her family unconditionally and put their health and happiness first.
I have a lot of good memories with my grandma, she'd always make the best apple crisp and no-bake cookies (and not just for anyone...sorry Val, lol), she drove on so many of my class field trips in school. During summer vacations, she'd have to deal with me and Samantha and all the trouble we'd get into, but she was never mad for long (even if we did throw rocks at cars or spray strangers with the water hose and run). She'd give us a dollar to spend at Ritzman's pharmacy, looking back it seems like that dollar bought us a months worth of candy. I think I'll always remember her as my redheaded grandma who we loved to visit.
I can't help but feel that she's gone too soon, too suddenly, and with that the world seems emptier. She'll be missed and will remain in our thoughts everyday. We love you grandma!
My own memories of my Grandmother start with her hugs for such a petite woman her hugs where strong. Sometimes I wasn't sure if I was going to be able to breathe again, but for some reason I just couldn't get enough of those hugs. My grandmother also taught me to write letters that came from my heart. I was even lucky enough to receive the a letter from her with the story of her falling in love with Grandpa. A story I am so glad she shared with me. Even being miles away from her she still found a way to connect with me, and love on me!
Breanna
I remember Grandma Billie as the sweetest thing that would always tell you how pretty you were even if you just rolled out of the bed. She was the first person to give a compliment and stick up the grand-kids when we were in in trouble because we were "good kids" I remember go-cart Sundays when one of us would wreck and Papa would get mad she would say "Frankie leave them, alone they aren't hurting anything."
Grandma had a love for life and children she never cared to sit and listen to a story she had heard a hundred times. She will be truly missed by all.
Mandy
Would also like everyone to know that no one will ever be able to make red potato salad the way grandma did.
Jessie
I have so many great memories. Monday, Wednesday, and Fridays were my favorite days. I would bring movies to Grandmas and we would sit together and watch movies and I would make her lunch. We spent so much time together and I enjoyed every minute. Her favorite movie was Happy Feet.... We watched it so many times, and it never got old. I brought over The Sisterhood Of The Traveling Pants and she loved it. I was sitting at home and the phone rang. It was grandma calling to tell me Sisterhood 2 was coming out and she wanted to go see it. So I got to her house one Friday and said okay lets go! We drove over to Lake cinemas and got some popcorn and sat through the movie. She was sobbing, and when girls where looking at her she said " I am old, I'm allowed to cry". We had some truly great times, and I'll cherish all of them for the rest of my life.
Valerie
There is not one fond memory of my grandmother and I, but an entire lifetime of memories that fill my heart. She was a person who never judged me despite the many mistakes I made. She always supported the decisions I made for myself. I remember playing hooky during the school year when I was little just so I could stay home with grandma all day. We would eat wonderful food like chicken livers and fried potatoes while we watched our channel five soap operas. To this day we could tell each other what was happening on those daily shows even if we had missed a few here and there. Grandma was part of my everyday life and it is going to be hard to knowing that piece of my day will be altered now that she is resting in heaven. I feel grandma was very proud of the person I have become, including the mother I am to her great granddaughter Lucielle. I am heartbroken to no longer have her in my life but I am thankful to now have such a wonderful angel watch over my family and I. With all my love to grandma; forever and always
Kirsten
I'm sure that no one has ever had better steaks than the $17 steaks we had from Giant Eagle, the ones that remind me of one of my fondest memories of Grandma Billie.
To celebrate one of our first meals official meals in the new house that dad and papa built, my dad gave me his debit card and told me to go to Giant Eagle and buy some steak for everyone so would could cook them on the grill. I did what I was told, but my parents weren't to happy when I returned and saw the receipt for the $17 dollar steaks. "Oh take it easy!" is probably what Papa said followed by Grandma Billie of course reminding my dad they like their steaks well, well, well, well, done....."NO PINK!" We all sat down for dinner and everyone took their first bite of steak... Well that bite began a running joke that has continued for the past 12 years. Both Papa and Grandma could not stop raving about the best steaks they have ever had. Every single bite, Grandma would say that she couldn't believe the steaks were from Giant Eagle....She's never had a better steak. She didn't care how much they cost....I heard about the steaks all night. After that night every dinner Grandma had involving a steak was automatically compared to my Giant Eagle Steaks. She would say we went to so-and-so for dinner last night they had steaks, but they were nothing compared to those ones.... "We had steak at Lonestar last week and I almost sent it back and went to Giant Eagle!" There has not been a steak since that night worth mentioning
I will never forget the dinner with Papa and Grandma in which we ate "The World's Best Steaks"
Lindsey
So many years that we have spent making memories. Spending summers in Ohio, going to get ice cream, going to the park chasing squirrels. Today is a day you never want to imagine would come, but knowing the strong Christian woman my Grandmother was. I know that today she wouldn't want us crying tears of sadness, but tears of joy. No matter how much older I got she always called me Grandma's Baby, and that I will forever be. Though we were miles apart she was only a phone call away. I hope that one day I can say I was half the woman she was!
Samantha
As I remember my Grandma Billie today I remember a sweet caring woman, and even miles apart I was felt so close. Running to the phone on Monday mornings to get to it first so I could talk before mom did.
Summer trips to stay with grandma where my favorite. Baseball games, painting each others finger nails, and going to the produce store. Is what I will remember. The trouble me and Allen would get into never mattered to her. She would yell at us and let us go. One thing through all the trouble we would cause, never did she let anyone think we done anything wrong. She would take up for us even when she knew we were guilty. She was there when I graduated, got married, and had my first baby. There isn't hardly a family memory that I have that she isn't in. Today as I say goodbye to my redhead Grandma I can't help but think about the one thing she would always tell me "Never go to sleep with saying I LOVE YOU". So today I say I love you Grandma Billie!!!
The Ending:
I am going to end our trip down memory lane with and excerpt from her grandson Allen's blog Brillance or Madness. Allen who is in the peace corp in Africa and was unable to join the family in Akron, Ohio, but we all know his heart was with us. Here is what he had to say in loving memory of his beloved Grandmother
For Grandma
I would like to take a moment to remember my grandmother, Billie R. Buccigrossi. She passed away October 14, 2009. I know that she is happy with the life she was given. She lived happily with my grandfather, Frank, and her children, grand children, and great grand children. She lived a good life and always wanted the best for everyone. She loves her family unconditionally and put their health and happiness first.
I have a lot of good memories with my grandma, she'd always make the best apple crisp and no-bake cookies (and not just for anyone...sorry Val, lol), she drove on so many of my class field trips in school. During summer vacations, she'd have to deal with me and Samantha and all the trouble we'd get into, but she was never mad for long (even if we did throw rocks at cars or spray strangers with the water hose and run). She'd give us a dollar to spend at Ritzman's pharmacy, looking back it seems like that dollar bought us a months worth of candy. I think I'll always remember her as my redheaded grandma who we loved to visit.
I can't help but feel that she's gone too soon, too suddenly, and with that the world seems emptier. She'll be missed and will remain in our thoughts everyday. We love you grandma!
Saturday, October 10, 2009
Brunette Prince
Many of my days lately, and even some sleepless tossing and turning nights my thoughts are filled with decisions we have to make for my four year old son Wesley. At first glance Wesley is like any other child. His marvelous blue eyes are filled to the brim with happiness. It takes a closer look and some background knowledge to understands this little boys hurtles. Wesley who has walked with a limp every since the day he took his first steps. His right foot which has very little movement, and leg with a under developed muscles. The disability causes some discomfort, and little things like standing on tip toes, running, buying a pair of shoes, or even walking for extended periods of time proves to be difficult, and sometimes impossible. His case is rare and often leaves Doctors scratching their heads to options, and treatments. Which to be honest makes me nervous, and a little on edge as we prepare for the next surgery, and venture to Georgia for one more final opinion. Today as I watch my none stop Wesley bounce from one daily distraction to another. I watch his eagerness to run fast, and his non complaining attitude. I realize how much braver he is than his Mommy. He chooses to be happy, and loving despite the discomforts, and challenges that face him on a daily basis. I could learn so very much from this marvelous, blue eyed, love giving, full of life, four year old trooper. He brings such joy to this family!!! Such a precious gift bestowed upon me the little brunette prince. I will continue to hold to hope, and pray for the day he crosses his final hurtle!
Thursday, October 8, 2009
Homecoming Date
The date was October 8th 1996 I was in the passenger seat driving down a familiar old gravel road. I was particularly chatty this day. Mom drove past the house and towards the old barn to where my Dad was clearing out the fence row. I had something very important to ask my Daddy on this day. I was in my first semester of my Freshman year of high school, and I had been ask out on my first real date. I thought for sure when I ask permission my Dad would say I was way to young, but he didn't he said yes. So later that evening I was off on the cool October evening to the homecoming football game in the passenger seat of a Crown Victoria with a Junior, and the man that would soon become my first love, not to mention the love of my life. I don't remember every detail of that night. I can't even tell you if we won or lost the game. I do remember it being pretty chilly that night. I also remember the butterflies throwing a huge party in my stomach, and laughing was a huge part of the evening. I was a 14 year old girl hoping on the stars he liked me as much as I liked him. Lucky for me he did, and on that cool October night at the football game in the student section in Hog-eye country two lives began to intertwine. That night I found my heart. I am not sure that I exactly new it at the time. Nor did I know that my true soul mate was going to be sitting next to me on the first date of my life. You just never know when love is going to gain her amazingly beautiful momentum!
Wednesday, October 7, 2009
The Question of "SAX"????
Like an Alford Hitchcock swarm of birds, the term "birds and the bees" frightens and freaks us parents out just about as much as an old horror film. A taboo subject that makes us want to put are hands over our ears, and sing silly kid songs so we can't hear the questions. Talking about sex with our children is just not a simple matter. So many questions surround the subject, and not just the questions the kids are asking. When do you bring up the subject? Do you wait until they ask or maybe when they hit some magical age of understanding? Do we attempt to pass it off to school education or even to the other parent? How much information do they get, and is subject an on going discussion or does it stop at THE TALK? Do your beliefs come in to play or are you strictly sticking to the facts of science? Does your child's personality come into play? Is it okay to lie a little when the question comes up before you are ready to give the answers? Do you use a parenting book, go by your own knowledge, or pass along the same information your parents gave you? So so many questions about such a small little word. Who would imagine that the word sex and the subject of the matter could cause such chaos, and down right fear in parents. Besides the subject bringing so many questions it also has an equal amount of opinions depending on the parenting style, knowledge, and faith of the parents. So that being said before your child ask you about the subject of "SAX". Which is what my friends 8 year old son called it when he popped the question on her, after hearing it on the morning news program. You might want to start asking yourself and arming yourself with some answers. Having a 7 year old son myself I started thinking about how I will answer his questions, and when I should bring up the topic for serious discussion. Truth be know I am not totally sure I have a plan. Hey just because I can write down the questions doesn't mean I get to escape the fear of the questions. I don't actually have any real answers to the questions I am just now starting to form my opinion on the subject. What I do know so far is this...I want my boys to be totally comfortable in asking me questions about any subject for that matter. So I will be open, honest, and truthful in my answers. I had much rather them learn the truth from me than fiction from someone else, or the television for that matter. I do not want the subject to make either of us blush, although I am sure that is going to be a lost cause. I do think that in my household their Father will be handling the topic with our three boys for the most part. Although I do want them to know mom is cable of handling the subject with confidence. I will not shy away from their questions, and I will not put them totally off on their Father (which I totally once thought I would). I want them to understand it's a serious subject, and I want them to be armored with information sooner rather than to late. I also believe for my family our values, Christian beliefs, and morals will play a valuable role. Ultimately I also must understand that while I can answer questions, teach values, and guide them to the best of my ability with love and truth it will be their own values and own beliefs that will guide them to make decisions regarding the subject of sex. All I can do is arm them with the proper information. So all in all when it comes down to this scary and often secretive topic I want my boys to know on an age appropriate levels what sex is. Now to figure out the right words, time, appropriate facts, and age to start this process well lets just say I am still working on sorting all that out inside my own head.... Why I do I get the fun feeling I better get it sorted!
Tuesday, October 6, 2009
Awkwardness One Bad Picture at a Time
Everyone has them them tucked away in a box, posted in long forgotten annuals, or even hanging proudly on the wall at grandma's house those embarrassing photos. The ones we wish didn't exist or at least the ones of us anyways. Well I ran across this website devoted to them. Suddenly my old embarrassing photos didn't seem so bad after all. The website's motto is 'Spreading the Awkwardness'. I must admit I spent about an hour glancing at the photos some made me laugh others almost cry. Talk about bad hair days, silly faces, strange events, and just plum what where they thinking moments. How I stumbled upon this website you might ask. Well I have to give my friend Sarah credit for this one. She posted a link on the mighty facebook. I also might add a thank you to Sarah for making my bad hair days, and silly moments actually seem kinda normal! So go ahead check out this weird, and wacky website dedicated to spreading the awkwardness, and they don't seem to be running out of the moments anytime soon. They add new photos and update almost everyday. Check out the bad hair, the all dressed to match in denim non the less, the grandparents who could use a lesson in modesty, the folks that love their pets a little to much, and the family photos that make even the blackest sheep in our families fit into the at least average category. Hey if it doesn't make you feel normal maybe you have some hidden awkward treasures to contribute to the site, or at least black mail your family and friends with. (insert evil laugh)! Either way take a look at all the glorious moments captured on film at awkwardfamilyphotos.com
Monday, October 5, 2009
Backyard Bunnies
During an afternoon with a brief break from the rain my husband decided to mow our yard or more fitting the jungle that was replacing my yard. As he was mowing he made a discovery of a burrow filled with three tiny hairless wild bunnies. They really where not so adorable on day one, but day two to my amazement they had gained some hair, and where starting to look more like rabbits. I have been checking on them daily to make sure they are looking healthy. Since I am not likely to see the doe rabbit during the day. She stays away from the nest for the most part only attending to babies a couple minutes a night. Contra to what some believe wild rabbits will not reject their offspring if they are touched by humans. Still I have thought it best to disturb them as little as possible. It has been a pretty amazing to be able to wittiness the growth of the babies, and how quickly that growth has taken place, and I thought my kids where growing up to fast! I am pretty sure that Momma rabbit is still attending to them and doing her job for they are becoming more and more active everyday. Poking their little heads out of the fur and grass mixed nest to checkout the world around them. They even hop around at the sound of foreign sounds when I come near. Finally they day came when there little eyes where open wide, and ears where standing straight up. They are just so sweet. Pretty amazing at what unexpected surprises you can find in your own backyard. The miracle of life, and the blessing of the world all around us. Sometimes we just need to take a closer look!
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