I'm noticing a trend.
I might be guilty of it, too, I'm not sure. I hope not. If I have been, I'm going to make more effort to avoid it in the future.
The trend?
I'll call it, "socially acceptable cyberbullying".
With the use of social media (facebook being the avenue I am most familiar with), it is really easy to post and forward pictures and videos of complete strangers, with the sole purpose of publicly having a laugh at their expense, or making ourselves look good by putting them down; usually encouraging and generating a lengthy brouhaha of comments within our circle of friends.
But, doesn't this look virtually (pun intended) a lot like standard, run-of-the-mill bullying? I am a father to three school-aged children, two of which have been the victims of some degree of bullying. Like many parents, I don't stand for that. It is not socially acceptable, or acceptable in any way, to bully my children! How dare these weak kids laugh amongst their bully friends at my kid's expense, or make themselves look strong by exploiting my kid's perceived weaknesses!
(The crowd rises to applause!)
But, don't we do something very similar when we publicly grab a stranger out of context and throw them out there on facebook to yuck it up with our friends?
Now, don't get me wrong... I'm not against having fun on facebook. And, I'm not a prude that can't have some virtual laughs with my friends. But, there is a difference between people who deliberately put themselves out there to be laughed at and those who do not (often times not even on the internet by their own choice).
Is it okay because they are strangers? Is it okay because it is virtual?
I'm not so sure.
Maybe I am more sensitive to this because I am a father of a special needs son. My son, at age five, does not always conform to all things socially acceptable. He is not always socially appropriate. But, he's five and it's kinda cute. I love him dearly, so it is endearing to me and most of my friends.
Yet, I sometimes notice that he draws some public attention. People that don't know him sometimes give second looks... sometimes disapproving looks. It is minor at this age and I think he is oblivious to it. But, I anticipate that as he gets older, it may become a bigger deal. We are considering school options for him and one of my BIG fears is bullying. He is naive, trusting and has virtually no street smarts, making him a prime target for bullying.
This is one of the things I love about him. He is the most genuine person I know. He cares not about what anyone thinks of him... he is just true to who he is. It is a beautiful innocence. Yet, it makes him a BIG target for bullies. It really scares this daddy!
And, the fact is that genetic abnormalities never go away. There is no cure. No fix. He will deal with this for life.
I have high hopes for him. Hopes for independence and productivity. Yet, realistically, I know he will always struggle to some degree in ways that most of us will not.
And... what if some day in the future, someone randomly captures him on their iPhone doing something socially inappropriate? What if that someone posts it to their YouTube account? What if several other someones then post it to their facebook pages and yuck it up with a brouhaha of comments with their friends about my son?
Well... I'll tell you what... it would hurt, that's what.
Yes, it would kill this father's heart.
He's my son! It's not okay to bully my son. It is not okay if you don't actually know him. It is not okay if your friends don't know him. It is not okay if you are doing it virtually and not to his face. It is not okay if he does not know or understand he is being bullied.
It is not okay to bully my son in any way.
Yet, don't we often do this to others?
When someone captures a random video of a stranger and posts it publicly, then it is laughed at and ridiculed publicly, is it okay if they are a stranger? Is it okay if it is virtual and not live?
They are a person. A living, breathing person with feelings and emotions. And, most of those yucking it up don't know the back story. Maybe they just had a stupid moment that was captured. We've all done things we wouldn't want captured. We've all said, "Glad nobody was watching that!" Or, maybe, like my son, there is more to the back story than meets the eye. Maybe intelligence or social understanding is lacking, through no fault of the individual. Maybe, in some way, they are perceived as weaker or inferior to us. Is it okay to exploit that for our entertainment or betterment.
On the surface it seems "virtually" innocent and harmless enough. And, I think it is currently becoming very normal and socially acceptable.
However, sometimes when I see these posts through my daddy's eyes... my special needs daddy's eyes... I am disturbed.
I'm sure I've done it. I'm sure I will still, at some point, do it. I'm not holier-than-thou.
But, I think social media could benefit from less socially acceptable cyberbullying.
I'm putting it out there in writing to hold myself accountable to attempt to do my part.
How about you?
Showing posts with label developmental delay. Show all posts
Showing posts with label developmental delay. Show all posts
Thursday, April 10, 2014
Friday, December 20, 2013
takin' care a me
Dylan had a Christmas band concert Wednesday evening. Our typical routine for band concerts is for one parent to take Dylan to the school at the report time (usually 30 minutes before start) and reserve seats for the rest of the family, who then show up with parent number two just moments before concert start. This is mostly for the sake of Ben, since his best behaviour would be used up during the half hour wait, if we all were to arrive together.
On Wednesday evening, I was parent number two. Unbeknownst to me, the evening included junior high and high school band and choir participating in the concert in the auditorium, while a simultaneous junior high basketball game was in progress in the gym. Ergo, the parking lot was filled upon my arrival. I had to park at the elementary school and hike across campus to the junior high building. I didn't factor that into my arrival time.
In order to make up the hike time, I decided to carry the often-distracted Benny most of the way. Although Benny seems younger than five years old, he is, in fact, five years old. A little big to be carried, but he doesn't necessarily realize that.
I was hoofing pretty briskly across the elementary parking lot with 42 pounds of Benny facing me and clinging to my neck, with Lily trying to keep up. We passed another family of three moving a little slower. As we moved slightly ahead of them, Benny, who knows no strangers, leaned around me, evidently enjoying being carried by his Daddy, and broke the parking lot silence with a bold conversation attempt with the family of three by announcing, "Daddy takin' care a me!". They offered no response back to Ben and we continued hoofing for the Jr. High building. Ben, as though I was not a part of the original conversation attempt, moved back to face me and said, in a more private voice, "Daddy, I said, 'Daddy takin' care a me!'"
On Wednesday evening, I was parent number two. Unbeknownst to me, the evening included junior high and high school band and choir participating in the concert in the auditorium, while a simultaneous junior high basketball game was in progress in the gym. Ergo, the parking lot was filled upon my arrival. I had to park at the elementary school and hike across campus to the junior high building. I didn't factor that into my arrival time.
In order to make up the hike time, I decided to carry the often-distracted Benny most of the way. Although Benny seems younger than five years old, he is, in fact, five years old. A little big to be carried, but he doesn't necessarily realize that.
I was hoofing pretty briskly across the elementary parking lot with 42 pounds of Benny facing me and clinging to my neck, with Lily trying to keep up. We passed another family of three moving a little slower. As we moved slightly ahead of them, Benny, who knows no strangers, leaned around me, evidently enjoying being carried by his Daddy, and broke the parking lot silence with a bold conversation attempt with the family of three by announcing, "Daddy takin' care a me!". They offered no response back to Ben and we continued hoofing for the Jr. High building. Ben, as though I was not a part of the original conversation attempt, moved back to face me and said, in a more private voice, "Daddy, I said, 'Daddy takin' care a me!'"
Smiling, falling in love with the kid all over again... "Yes, Ben, Daddy is taking care of you!"
dad's memories
I recently added a new blog subject label* entitled "Dad's memories". There are times in the lives of my kids, especially in their younger years, when they did or said something that made me smile, laugh, or that I find just plain cute. Sadly, many, if not most, of these are forgotten. Once in a while we may be reminded by stumbling across a certain photograph. Or, perhaps it is something that is said or done frequently enough that it becomes a permanent family memory. Mostly, though, they are just a moment in time, forgotten if not somehow preserved. Some of them become facebook posts, but facebook, too, is somewhat forgetful of last week's statuses in favor of the latest, freshest newsfeed posts.
*If you pay any attention to the subject labels on my blog posts, you may notice that they are not just random labels. I try to keep the number of subject labels somewhat to a minimum, and I try to make the majority of the labels recurring themes in my blog. If you've never paid attention to them, notice that the subjects are all listed in the sidebar with the number of posts in each particular label. If you click a subject label of interest, the blog screen will display every post written with that subject label.I'm pretty sure that blogs are better preservers of such moments... if the blogger takes the time to record them. And, that is the thought behind "Dad's memories". Some lengthy posts may be recorded under the "Dad's memories" label, but many have been, and will be, just short snapshot posts of a memory to preserve, scattered among other blog content... a photo with caption here, a few paragraphs there. They are some of the moments in life that I never want to forget, but I will unless I am intentional in capturing them.
I'm finding many of these "snapshot moments" as I learn to parent a child with developmental disabilities. As parents, we often wish our kids would grow up, then mourn that they are growing up too fast. Parenting a child with developmental disabilities tends to extend the childhood years and slow the pace of growing up. This can be both frustrating and beautiful. I try to focus on the beautiful as much as possible, and Benny brings joy to my life on a daily basis.
If you have not walked a mile, or two, in the shoes of a parent of a child with developmental disabilities, you may not fully understand the myriad of emotions that are associated. Many of these "snapshot moments" with Benny are bittersweet. They are sweet because they make me (and others) smile or laugh. They make me fall in love with this boy all over again. They make me love his innocence, naivety and his sweet spirit. Yet they also make me grieve for him. I grieve because he does not always understand the world around him and that the world is full of wolves that would take advantage of and exploit his naivety. I know that he is likely destined to experience some hardship from others for the very same things that I love about him. I want to protect him from all of that... but I won't always be able to.
I hesitate to publish some aspects of Benny publicly, for fear that the wrong people may read it, or that those who read may not understand, or that he will not appreciate it when he someday may read it for himself. Yet, when the hard days and the mean people come to try to shatter his innocence and take away his naivety... when the world tries to make him afraid to trust and engage his whole world, stranger or not, I want a record preserved of Benny's childhood and some of the small moments his Daddy celebrated him, and the moments he, sometimes unknowingly, brought joy into my life. I can't imagine my life without this kid and these daily moments of happiness.
I love you Benny, and I thank you for giving me much inspiration for "Dad's memories"!
Tuesday, October 8, 2013
I knew... but I don't know
"I think there's something different about this one", I told Jen within a few hours of Ben's birth.
Circumstances of the arrival of all four of our children dictated that I met each of them first. I held each of our three sons within seconds of their arrival and held our daughter at the moment she was united with her forever family. I will forever cherish those moments with each of my children.
And... when I first held Benny, I knew. You hear a lot about mother's intuition, but what about father's intuition?
I can't explain how I knew.
I just knew.
Circumstances of the arrival of all four of our children dictated that I met each of them first. I held each of our three sons within seconds of their arrival and held our daughter at the moment she was united with her forever family. I will forever cherish those moments with each of my children.
And... when I first held Benny, I knew. You hear a lot about mother's intuition, but what about father's intuition?
I can't explain how I knew.
I just knew.
I am, for the most part, a realist. Like most realists, I am often mistaken for a pessimist. If you don't understand realists... well, they say a picture is worth a thousand words:
So, it was not surprising that my realist father's intuition was dismissed. For the first months of his life, in fact, it was dismissed. Ben looked healthy and typical, so I, too, often dismissed the thought that something was amiss. Yet, it never completely left me. It was a niggling little uneasiness that often hovered near.
When he was months old, it started to become apparent to us that Benny was developmentally starting to fall behind the milestones of his age peers, and we began to discuss this with his pediatrician. At age two, he was plugged into early intervention programs and therapies two days per week through our county school for developmental delay, and shortly thereafter started seeing a neuro-developmental specialist. Still, there was not great concern... many kids fall a bit behind and then catch up with their peers.
His realist Dad cheered him on and hoped that they were right... that he would catch up. Yet, realists are not afraid to consider the "what ifs", and the niggling uneasiness often returned. What if he doesn't catch up? I wanted him to. And, I wished him to. And, I cheered him to that goal. But, often, deep inside, I felt there was more to Benny than just a bit of lagging behind his peers. What if I was right at birth, and there really is "something different about this one"?
I felt that most people, again, viewed even considering that possibility as pessimism. As though somehow, by my very considering that Ben could be an atypical child, I would bring the fate to bear upon him.
So, therapies continued. Gains were made. Attaboy, Benny!
At age three, Ben started preschool full-time at the same county school. Despite developmental progress, his age peers continued to outpace him and widen the gap. His neuro-developmental specialist advised to hold the course until and if he reached the point where his developmental age was half of his chronological age. In his fourth year, that occurred, and the approach was adjusted to begin to explore the possibility of a diagnosable explanation for Ben's delays. In fact, it was becoming more and more obvious that there was probably something more going on with Benny than we all first hoped.
Early this summer, Ben was referred to a genetic specialist, who ordered a battery of genetic array testing. Upon observing him, she initially threw out a few possibilities, and we immediately began internetdiagnosis research while we waited for the results to come back. One of the possibilities she mentioned really seemed to fit Ben, and although we hoped the test would confirm otherwise, we were fairly convinced that the results would be positive for this particular genetic syndrome.
When we learned of the results, to our slight surprise, he was negative for that syndrome.
But... he was diagnosed with another genetic disorder that, prior to that day, the name of which was completely unknown to us: Isodicentric Chromosome 15 Duplication, also known as Idic 15.
Genetically, the cells that make up a typical human carry 46 chromosomes... 23 from Dad and 23 from Mom. Individuals with Idic 15 have 47 chromosomes, because a portion of Mom's 15th chromosome gets duplicated. Our creator designed us very specifically to function with 46 chromosomes, so an extra one really throws a kink in the works.
Idic 15 is considered a "hidden disability". Because it has almost no outward physical markers, when most people see a meltdown in the aisle of Wal-Mart, they just see a bratty kid with ineffective parents. I have learned to be much more graceful to other parents in public. Idic 15 has taught me that things are definitely not always what they appear to be. The looks and reactions (whether real or imagined) of others, when public scenes occur, used to bother me a lot more than they do now. I used to question whether I truly was an ineffective parent with a bratty kid or whether there was truly "something different about this one". I still don't like making public scenes, I don't just blow behavior issues off and chalk them up to Idic 15 and there are still some things we refrain from participating in because of Idic 15; but, I know they are going to happen and I know they are happening for a legitimate reason, so we are now more free as a family to just be ourselves, and there is a certain amount of disturbance that you are just going to have to endure!
Because of Idic 15, my son can potentially be affected by a list of related difficulties (and, he is touched, to some degree, by nearly all of these):
My son is a hero.
He doesn't know that life is not supposed to be this hard... this confusing... this difficult to process. This is all he knows, and every day he gets up to face the world with bravery, although some of it is scary to him, some of it does not make sense to him and some of it causes him anxiety. He does the best he can with the hand that is dealt him, and in the process, he brings smiles and laughter to most with which he crosses paths.
Parenting is hard enough.
Parenting a child with special needs is even harder.
I want to give him a big squeeze and hug it all away, but, alas, Idic 15 is hardwired into his genetics and it is there for life. Somehow, I knew it was there, but I admit, I have only just begun to explore what it means. What does the future hold for Benny? Or, for us, his parents and siblings?
Well, that I don't know.
But, I know that I love this little guy!
So, it was not surprising that my realist father's intuition was dismissed. For the first months of his life, in fact, it was dismissed. Ben looked healthy and typical, so I, too, often dismissed the thought that something was amiss. Yet, it never completely left me. It was a niggling little uneasiness that often hovered near.
When he was months old, it started to become apparent to us that Benny was developmentally starting to fall behind the milestones of his age peers, and we began to discuss this with his pediatrician. At age two, he was plugged into early intervention programs and therapies two days per week through our county school for developmental delay, and shortly thereafter started seeing a neuro-developmental specialist. Still, there was not great concern... many kids fall a bit behind and then catch up with their peers.
His realist Dad cheered him on and hoped that they were right... that he would catch up. Yet, realists are not afraid to consider the "what ifs", and the niggling uneasiness often returned. What if he doesn't catch up? I wanted him to. And, I wished him to. And, I cheered him to that goal. But, often, deep inside, I felt there was more to Benny than just a bit of lagging behind his peers. What if I was right at birth, and there really is "something different about this one"?
I felt that most people, again, viewed even considering that possibility as pessimism. As though somehow, by my very considering that Ben could be an atypical child, I would bring the fate to bear upon him.
So, therapies continued. Gains were made. Attaboy, Benny!
At age three, Ben started preschool full-time at the same county school. Despite developmental progress, his age peers continued to outpace him and widen the gap. His neuro-developmental specialist advised to hold the course until and if he reached the point where his developmental age was half of his chronological age. In his fourth year, that occurred, and the approach was adjusted to begin to explore the possibility of a diagnosable explanation for Ben's delays. In fact, it was becoming more and more obvious that there was probably something more going on with Benny than we all first hoped.
Early this summer, Ben was referred to a genetic specialist, who ordered a battery of genetic array testing. Upon observing him, she initially threw out a few possibilities, and we immediately began internet
When we learned of the results, to our slight surprise, he was negative for that syndrome.
But... he was diagnosed with another genetic disorder that, prior to that day, the name of which was completely unknown to us: Isodicentric Chromosome 15 Duplication, also known as Idic 15.
Genetically, the cells that make up a typical human carry 46 chromosomes... 23 from Dad and 23 from Mom. Individuals with Idic 15 have 47 chromosomes, because a portion of Mom's 15th chromosome gets duplicated. Our creator designed us very specifically to function with 46 chromosomes, so an extra one really throws a kink in the works.
Idic 15 is considered a "hidden disability". Because it has almost no outward physical markers, when most people see a meltdown in the aisle of Wal-Mart, they just see a bratty kid with ineffective parents. I have learned to be much more graceful to other parents in public. Idic 15 has taught me that things are definitely not always what they appear to be. The looks and reactions (whether real or imagined) of others, when public scenes occur, used to bother me a lot more than they do now. I used to question whether I truly was an ineffective parent with a bratty kid or whether there was truly "something different about this one". I still don't like making public scenes, I don't just blow behavior issues off and chalk them up to Idic 15 and there are still some things we refrain from participating in because of Idic 15; but, I know they are going to happen and I know they are happening for a legitimate reason, so we are now more free as a family to just be ourselves, and there is a certain amount of disturbance that you are just going to have to endure!
Because of Idic 15, my son can potentially be affected by a list of related difficulties (and, he is touched, to some degree, by nearly all of these):
- Hypotonia (overall weakness, "floppiness" and tiring easily)
- Gross and fine motor delays
- Cognitive delays
- Learning disabilities
- Intellectual disabilities
- Autism Spectrum Disorders
- Speech and language delays
- Sensory Processing Disorders
- Behavior and social challenges
- Seizure disorders/Epilepsy
- Attention Deficit Hyperactive Disorder (ADHD)
- Anxiety Disorders
My son is a hero.
He doesn't know that life is not supposed to be this hard... this confusing... this difficult to process. This is all he knows, and every day he gets up to face the world with bravery, although some of it is scary to him, some of it does not make sense to him and some of it causes him anxiety. He does the best he can with the hand that is dealt him, and in the process, he brings smiles and laughter to most with which he crosses paths.
Parenting is hard enough.
Parenting a child with special needs is even harder.
I want to give him a big squeeze and hug it all away, but, alas, Idic 15 is hardwired into his genetics and it is there for life. Somehow, I knew it was there, but I admit, I have only just begun to explore what it means. What does the future hold for Benny? Or, for us, his parents and siblings?
Well, that I don't know.
But, I know that I love this little guy!
Benny, you are my favorite Benny in the whole world. I'm lucky to be your Dad, Little Man!
Sunday, February 10, 2013
non-competative
I had mentioned in a few blog posts quite a while back that we were on a church search (which started in late 2009). Then I posted, also quite a while back, that I thought we had finally landed. As it turns out, that post was premature. Seems we have been on a three-plus year streak of willy-nilly non-committal church attendance, and we still do not have what I consider a home.
It is really my fault. I got discouraged from a past church experience, and I am seemingly just wallowing in it, claiming to be in a mode of "pulling back to regroup". Enough, already... it's been three years!
The issue that seemed to be stalling me for the past several months, though, is Benny. As a very active toddler with developmental delays, Benny can't just be dropped off in a Sunday School classroom or Kid's Church with age peers and be expected to fit in easily... it's a little more difficult than that. It was not so bad when he was in a nursery environment, but once he outgrew the nursery, the easy solution has just been leaving him at home. For months, I have taken the three older kids to church (hit and miss), and Ben and Jen have stayed at home. Not ideal, but that is how we chose to cope with the situation.
As with many people, I don't really make New Year's resolutions, but I do tend to get a burst of new motivation with the new year. Motivation to get more organized, start healthy habits, break some not-so-good habits... that sort of thing.
This year, a goal of mine is to stop wallowing in non-committal church attendance. I need to get my family more grounded in Sunday School classes and better established in a "church home". And, yes, that includes Benny, too.
The dilemma is that the smaller church we have been attending does not really have a "plan" for special needs children. I don't fault them for that... they have likely never had the need to think on this before. More about this in a moment...
There is a second very different choice that I am also considering. The other choice is about a 15 mile drive from my home, which I consider to be a long distance for a church relationship. We had tried this church when we first started searching, but I deemed it to be too far. It is a much larger church, though, which equates to experience with special needs children.
I decided to explore a wider range of each church with the older kids (to date, we have mostly just been going to the worship hour and skipping Sunday School), and exploring options for Benny by talking to the two churches to see what his options are, before I introduce him to Sunday School. My thinking is that I don't want to bounce him back and forth until I make up my mind... that would be hard on Benny.
In carrying out my exploration, I scheduled an appointment with the Children's Minister of the larger church. Benny and I met with her one evening and she laid out a plan for integrating him into a class that she felt appropriate for him. I was impressed.
I also scheduled a time to meet with my current Pastor to discuss what could be done to accommodate him there. Again, I was impressed... but for a different reason.
My current Pastor is a very gracious and humble man. He loves people and I don't think there is anything he could be doing that is more suitable to him than pastoring. I come from a childhood church background that now seems rather narrow in it's thinking, to me. He is similar in thought (fairly narrow), but he has impressed me on past occasions with things he has said that are much less narrow than I would expect. An example is a sermon I wrote about in this blog post just about a year ago.
And this recent conversation was no exception. As we talked, I outlined my thinking and the pros and cons of each church option, as it not only related to Benny, but my family as a whole. I communicated how I was torn in my decision and was wrestling with the 2 very different options. He outlined some suggestions of how we could accommodate Benny and he assured me that he was open to helping my family in any way he could. I know him well enough that I expected all this.
Then came something that I didn't expect. This Pastor encouraged me to consider something that seems fairly unorthodox for a pastor to suggest. Although it is not what either of us considered to be ideal, he encouraged me to consider an ala carte approach, if that was what would truly meet the needs of my family during this phase of our lives.
Two churches?
Really?
A pastor just encouraged me to consider going there for what met my needs and coming to his church for what met my needs?
Wow! I honestly don't think there are many pastors that would willingly offer to "share" church folk with other churches... at least not from my experience. It seems to me that pastors want to grow their churches, and sharing their attenders with another church seems a bit counter-productive. But, my pastor recognized that the more important thing was to grow and strengthen my family ahead of growing and strengthening the church he pastors. He suggested that if the resources of the larger church were better to accommodate Benny on Sunday morning, then go there, but if the distance made it difficult to be involved in some other options for family members, then plug into the hometown youth group, children's ministries and Bible studies, which meet at times other than Sunday morning.
I do not believe that is an ideal scenario. My ideal plan would be to have one church home. Although I had already considered this option as a possibility, I considered it a bit rogue and likely to not be well received. But, it is possible, at least for this phase of our lives, that this may be an option that is good for my family. I have not made a decision yet, but I applaud my pastor for being open-minded and non-competitive.
After all... shouldn't God's churches be non-competitive?
It is really my fault. I got discouraged from a past church experience, and I am seemingly just wallowing in it, claiming to be in a mode of "pulling back to regroup". Enough, already... it's been three years!
The issue that seemed to be stalling me for the past several months, though, is Benny. As a very active toddler with developmental delays, Benny can't just be dropped off in a Sunday School classroom or Kid's Church with age peers and be expected to fit in easily... it's a little more difficult than that. It was not so bad when he was in a nursery environment, but once he outgrew the nursery, the easy solution has just been leaving him at home. For months, I have taken the three older kids to church (hit and miss), and Ben and Jen have stayed at home. Not ideal, but that is how we chose to cope with the situation.
As with many people, I don't really make New Year's resolutions, but I do tend to get a burst of new motivation with the new year. Motivation to get more organized, start healthy habits, break some not-so-good habits... that sort of thing.
This year, a goal of mine is to stop wallowing in non-committal church attendance. I need to get my family more grounded in Sunday School classes and better established in a "church home". And, yes, that includes Benny, too.
The dilemma is that the smaller church we have been attending does not really have a "plan" for special needs children. I don't fault them for that... they have likely never had the need to think on this before. More about this in a moment...
There is a second very different choice that I am also considering. The other choice is about a 15 mile drive from my home, which I consider to be a long distance for a church relationship. We had tried this church when we first started searching, but I deemed it to be too far. It is a much larger church, though, which equates to experience with special needs children.
I decided to explore a wider range of each church with the older kids (to date, we have mostly just been going to the worship hour and skipping Sunday School), and exploring options for Benny by talking to the two churches to see what his options are, before I introduce him to Sunday School. My thinking is that I don't want to bounce him back and forth until I make up my mind... that would be hard on Benny.
In carrying out my exploration, I scheduled an appointment with the Children's Minister of the larger church. Benny and I met with her one evening and she laid out a plan for integrating him into a class that she felt appropriate for him. I was impressed.
I also scheduled a time to meet with my current Pastor to discuss what could be done to accommodate him there. Again, I was impressed... but for a different reason.
My current Pastor is a very gracious and humble man. He loves people and I don't think there is anything he could be doing that is more suitable to him than pastoring. I come from a childhood church background that now seems rather narrow in it's thinking, to me. He is similar in thought (fairly narrow), but he has impressed me on past occasions with things he has said that are much less narrow than I would expect. An example is a sermon I wrote about in this blog post just about a year ago.
And this recent conversation was no exception. As we talked, I outlined my thinking and the pros and cons of each church option, as it not only related to Benny, but my family as a whole. I communicated how I was torn in my decision and was wrestling with the 2 very different options. He outlined some suggestions of how we could accommodate Benny and he assured me that he was open to helping my family in any way he could. I know him well enough that I expected all this.
Then came something that I didn't expect. This Pastor encouraged me to consider something that seems fairly unorthodox for a pastor to suggest. Although it is not what either of us considered to be ideal, he encouraged me to consider an ala carte approach, if that was what would truly meet the needs of my family during this phase of our lives.
Two churches?
Really?
A pastor just encouraged me to consider going there for what met my needs and coming to his church for what met my needs?
Wow! I honestly don't think there are many pastors that would willingly offer to "share" church folk with other churches... at least not from my experience. It seems to me that pastors want to grow their churches, and sharing their attenders with another church seems a bit counter-productive. But, my pastor recognized that the more important thing was to grow and strengthen my family ahead of growing and strengthening the church he pastors. He suggested that if the resources of the larger church were better to accommodate Benny on Sunday morning, then go there, but if the distance made it difficult to be involved in some other options for family members, then plug into the hometown youth group, children's ministries and Bible studies, which meet at times other than Sunday morning.
I do not believe that is an ideal scenario. My ideal plan would be to have one church home. Although I had already considered this option as a possibility, I considered it a bit rogue and likely to not be well received. But, it is possible, at least for this phase of our lives, that this may be an option that is good for my family. I have not made a decision yet, but I applaud my pastor for being open-minded and non-competitive.
After all... shouldn't God's churches be non-competitive?
Thursday, April 26, 2012
lessons from Benny
With the arrival of spring weather, Benny really wants to be outside! I enjoy walking, and often take walks around the neighborhood to unwind after work. He enjoys riding in the stroller (who wouldn't?), so the two of us (and sometimes some of the other kids), can often be seen strolling around town in the evenings. Benny has a certain park that he loves to go to, and the playground equipment there is just his size, so this is one of our favorite destinations.
If you spend any time with Benny, one thing that is obvious about him is that he is a social creature. He may not have an extensive vocabulary, and he really cannot engage in a conversation unless it is within a limited range of topics. (Even a simple question like, "what's your name?", gets lost on Benny). However, it doesn't matter if they understand him, or not, Benny will talk to anyone.
Anyone.
And therein lies the lesson.
I consider myself a pretty friendly guy. Yet, I am selectively friendly. I tend to size up people when I pass them on the sidewalk, and only give a friendly "hi" to those I deem as friendly, or receptive of my greeting. Not so with Benny... happy couple pushing a stroller, friendly looking grandfather-type, teenage lovers neckin' on the sidewalk, or heavily tattooed and pierced individual spewing profanity: all the same to Benny... people. And if people are in the vicinity of Benny, they usually can't escape his enthusiastic, "Hi!"
I sometimes cringe when he shouts out a greeting, but I think God smiles. I think Benny sees people much like God does, without stereotypes and preconceived ideas... just people.
I'm writing this for myself, but I suspect it applies to more than just me. Might the world be a better place if everyone saw people through eyes like Benny's?
If you spend any time with Benny, one thing that is obvious about him is that he is a social creature. He may not have an extensive vocabulary, and he really cannot engage in a conversation unless it is within a limited range of topics. (Even a simple question like, "what's your name?", gets lost on Benny). However, it doesn't matter if they understand him, or not, Benny will talk to anyone.
Anyone.
And therein lies the lesson.
I consider myself a pretty friendly guy. Yet, I am selectively friendly. I tend to size up people when I pass them on the sidewalk, and only give a friendly "hi" to those I deem as friendly, or receptive of my greeting. Not so with Benny... happy couple pushing a stroller, friendly looking grandfather-type, teenage lovers neckin' on the sidewalk, or heavily tattooed and pierced individual spewing profanity: all the same to Benny... people. And if people are in the vicinity of Benny, they usually can't escape his enthusiastic, "Hi!"
I sometimes cringe when he shouts out a greeting, but I think God smiles. I think Benny sees people much like God does, without stereotypes and preconceived ideas... just people.
I'm writing this for myself, but I suspect it applies to more than just me. Might the world be a better place if everyone saw people through eyes like Benny's?
Monday, March 19, 2012
another happy birthday
This is one of those short snippets of life that I never want to forget.
I've mentioned before that my youngest, Benny (age 3 1/2), is developmentally delayed, and although growing, his verbal skills and vocabulary are behind most kids his age. One big example is vocabulary to express emotions. As previously written here and here, he knows what "I'm sad" feels like, but he communicates it, "I sorry". He also knows what "I'm happy" feels like, but he communicates it, "happy birthday!"
This weekend, Jen was away with her Mom on a women's retreat with her Mom's church. I was in charge... which means I put aside many of the projects that often distract me, and focused on just being a Dad a little more than I usually do.
Saturday was unseasonably warm in northeast Ohio... like 70-degree-range-two-months-earlier-than-normal warm! Saturday evening, I got the fire pit out of the shed and set it up for the first backyard fire of the season. I was sitting around the fire with all the kids, with Benny cuddling on my lap (the ONLY safe place for Benny to be when a fire is burning!)
Benny looked up at me and sweetly asked, "Dad... this a happy birthday?"
Yes, Benny, not by the calendar, but the moment feels a lot like a happy birthday to me!
I've mentioned before that my youngest, Benny (age 3 1/2), is developmentally delayed, and although growing, his verbal skills and vocabulary are behind most kids his age. One big example is vocabulary to express emotions. As previously written here and here, he knows what "I'm sad" feels like, but he communicates it, "I sorry". He also knows what "I'm happy" feels like, but he communicates it, "happy birthday!"
This weekend, Jen was away with her Mom on a women's retreat with her Mom's church. I was in charge... which means I put aside many of the projects that often distract me, and focused on just being a Dad a little more than I usually do.
Saturday was unseasonably warm in northeast Ohio... like 70-degree-range-two-months-earlier-than-normal warm! Saturday evening, I got the fire pit out of the shed and set it up for the first backyard fire of the season. I was sitting around the fire with all the kids, with Benny cuddling on my lap (the ONLY safe place for Benny to be when a fire is burning!)
Benny looked up at me and sweetly asked, "Dad... this a happy birthday?"
Yes, Benny, not by the calendar, but the moment feels a lot like a happy birthday to me!
Tuesday, December 27, 2011
some-ping
Although three year-old Ben's language still lags far behind his peers, he has been making big strides in the past several months. Occasionally, he catches us off guard with a word we didn't know he knew, or a phrase we've never heard before. It usually has one of two results: excitement or laughter.
Last night was another example (of the laughter variety). We all went out to do a little shopping for things for the new part of the house, and we were going to grab a few sandwiches at Chick-Fil-A (none of us have ever eaten there before). As we drove into the parking lot, we could see the restaurant was very crowded, had a play area, and looked like an environment that would tax Benny's behaviour. Since we weren't going to be out much longer, we decided, instead, to just pick up a pizza on the way home. Everyone understood the decision, except Benny, whose belly was telling him it needed food and drink.
The conversation went something like this:
Last night was another example (of the laughter variety). We all went out to do a little shopping for things for the new part of the house, and we were going to grab a few sandwiches at Chick-Fil-A (none of us have ever eaten there before). As we drove into the parking lot, we could see the restaurant was very crowded, had a play area, and looked like an environment that would tax Benny's behaviour. Since we weren't going to be out much longer, we decided, instead, to just pick up a pizza on the way home. Everyone understood the decision, except Benny, whose belly was telling him it needed food and drink.
The conversation went something like this:
Ben: "Noach!" (his word for "milk")
Jen: "I don't have any, we'll get you some when we get home."
Ben: "Juice!"
Jen: "I don't have any of that either... we'll be home soon."
Ben: "Grrrrrrr!"
Ben: "Fwies!" (fries)Laughter ensued!
Jen: "We're going to have some pizza when we get home."
Ben: "Noach!"
Jen: "I don't have any milk, buddy."
Ben: "I NEED... SOME-PING!"
Sunday, November 20, 2011
happy birthday!
There is a sidebar story to last weekend's events of moving into the new kitchen that I don't want to get lost in the busyness of life.
Benny's language and vocabulary skills seem to be growing almost daily, which thrills us! But, he is still obviously way behind a typical three year-old. It is still often hard for us to understand a lot of what he tries to communicate, and it is often hard to understand what he understands. It can be frustrating... for both him and us!
He is, however, very social. He'll talk to you whether or not you understand, and he'll laugh at himself, even if nobody quite knows what is funny. He's a real character.
Occasionally, though, he communicates something pretty profound in a way you would never expect. Just such a thing happened this past weekend.
Benny couldn't really tell us what he understood about the whole concept of waiting seven years to move into a part of the house that we had never before occupied. He couldn't tell us what he understood about the feeling of finally having a fully functional kitchen, and a dining area and table big enough to accommodate six people. He couldn't tell us what he understood about how much we all hated the cramped, dingy, drafty "temporary" kitchen we were moving out of.
But, he new something exciting was going on. He knew the family was excited. He knew he was excited about the open space to expand his toys into and explore. He knew he was excited to finally have a place at the table with the family. His expressions and his actions told us he was excited! However, he wanted to tell us with words, just so there was no mistake that he was excited.
Pretty hard for a kid who knows what he wants to communicate, but doesn't have the words. And, even though Benny experienced the feelings, he just didn't exactly have those words.
As Jen was getting him ready for bed last Saturday night (the night we opened the wall and ate our first meal in the new kitchen), he pointed down (his bedroom is over top of the new area) and repeatedly and excitedly said, "down... happy birthday!" It took us a little while to figure it out, but he was telling us that in the limited vocabulary he has, the only words he could find to match the excitement of the evening was a good, heartfelt "happy birthday!" The interpretation: "down[stairs] [is exciting like a] happy birthday!"
Since then, he has randomly, and on numerous occasions, walked into the kitchen and exclaimed, "happy birthday!" with a big smile on his face. Yes, Benny Jay, it is exciting like a happy birthday!
Saturday, July 16, 2011
"I sorry"
Benny has been on my mind (and in my blog) a lot, lately. To be fair to Benny, he's not all tantrums and exhaustion. No, not at all! Here's a glimpse into what makes Benny so lovable:
Benny makes us laugh. His laugh is infectious, and he often laughs at himself. He's almost three, but his antics remind me more of the range of an 18 month to two year-old. He'll often remind you that he's funny, just in case you miss it. "I funny, I funny". The gift is that he does it innocently, not bragging, and proud that he knows the words to express the thought.
Benny is very repetitive. His vocabulary and language skills are limited for his age, so I think he fills gaps in "conversations" by repeating himself. He never really says anything just once, and if you're not focusing, he'll often repeat it until you listen. It's not an annoying, nagging repetitive, but a very sweet, patient repetitive. His soft, little innocent voice, trying hard to make communication happen, just makes me want to squeeze the stuffing out of him.
Benny moves fast when he moves, but he often gets absorbed in his own zone. He may be focusing on a particular toy, or putting on someone else's shoes (which he loves to do), and concentrating hard on accomplishing one particular task. When he is in one of his concentration zones, I love to just sit and watch him (without him realizing he is being watched). Also, Benny still loves to snuggle and be rocked at bedtime. Momma mostly spends this time with him, but sometimes I move in on her territory and spend some cuddle time with him. It's hard to describe, but with time moving so fast around me, Benny's developmental delay is like time occasionally stands still, allowing me to just savor his extended toddlerhood. I don't remember these moments with my other kids.
Benny is affectionate. He's a hugger and a kisser. When I ask for a kiss, he rarely turns me down, and rarely do I not get a face full (all accentuated by a "mmmmm" and spaced by a teasing Benny pause).
Benny can be tender and compassionate. He loves animals, especially dogs. "Ahhh, pup-pee" is something we often hear when we take walks, as he reaches out to touch the dog and love on it. He sometimes senses tension in people, and tries to help the situation. Recently, Lily was in trouble and I made her stand in the corner. Benny, trying to be helpful to her, snuggled up beside her in the corner, and softly whispered, "sorry... sorry... sorry". I'm not sure if he was sorry she was in trouble, or coaching her to "say sorry" and make it better. Either way, it was adorable.
"Sorry" is one of my all time favorite Benny words. He learned the word several weeks ago, and has been using it pretty extensively. He has not fully refined the meaning of the word, and I usually smile when he says it (usually very tenderly). It can literally mean, "I'm sorry", but it has a few other meanings. It can mean, "I'm sad", as seen in the recent days of bus riding. It also means, "I'm hurt" (one of my favorites). Benny is a little on the clumsy side, so it's not uncommon for him to hurt himself (not bad, just a bump here, a bruise there). On numerous occasions, I've seen him stub a toe or bang an elbow, followed by (speaking to himself), "Ooooo, I sorry."
No, Benny is not just a stressful handful of a kid. To know Benny is to love him. It's also to look forward to his bedtime... but it's to love him!
Benny makes us laugh. His laugh is infectious, and he often laughs at himself. He's almost three, but his antics remind me more of the range of an 18 month to two year-old. He'll often remind you that he's funny, just in case you miss it. "I funny, I funny". The gift is that he does it innocently, not bragging, and proud that he knows the words to express the thought.
Benny is very repetitive. His vocabulary and language skills are limited for his age, so I think he fills gaps in "conversations" by repeating himself. He never really says anything just once, and if you're not focusing, he'll often repeat it until you listen. It's not an annoying, nagging repetitive, but a very sweet, patient repetitive. His soft, little innocent voice, trying hard to make communication happen, just makes me want to squeeze the stuffing out of him.
Benny moves fast when he moves, but he often gets absorbed in his own zone. He may be focusing on a particular toy, or putting on someone else's shoes (which he loves to do), and concentrating hard on accomplishing one particular task. When he is in one of his concentration zones, I love to just sit and watch him (without him realizing he is being watched). Also, Benny still loves to snuggle and be rocked at bedtime. Momma mostly spends this time with him, but sometimes I move in on her territory and spend some cuddle time with him. It's hard to describe, but with time moving so fast around me, Benny's developmental delay is like time occasionally stands still, allowing me to just savor his extended toddlerhood. I don't remember these moments with my other kids.
Benny is affectionate. He's a hugger and a kisser. When I ask for a kiss, he rarely turns me down, and rarely do I not get a face full (all accentuated by a "mmmmm" and spaced by a teasing Benny pause).
Benny can be tender and compassionate. He loves animals, especially dogs. "Ahhh, pup-pee" is something we often hear when we take walks, as he reaches out to touch the dog and love on it. He sometimes senses tension in people, and tries to help the situation. Recently, Lily was in trouble and I made her stand in the corner. Benny, trying to be helpful to her, snuggled up beside her in the corner, and softly whispered, "sorry... sorry... sorry". I'm not sure if he was sorry she was in trouble, or coaching her to "say sorry" and make it better. Either way, it was adorable.
"Sorry" is one of my all time favorite Benny words. He learned the word several weeks ago, and has been using it pretty extensively. He has not fully refined the meaning of the word, and I usually smile when he says it (usually very tenderly). It can literally mean, "I'm sorry", but it has a few other meanings. It can mean, "I'm sad", as seen in the recent days of bus riding. It also means, "I'm hurt" (one of my favorites). Benny is a little on the clumsy side, so it's not uncommon for him to hurt himself (not bad, just a bump here, a bruise there). On numerous occasions, I've seen him stub a toe or bang an elbow, followed by (speaking to himself), "Ooooo, I sorry."
No, Benny is not just a stressful handful of a kid. To know Benny is to love him. It's also to look forward to his bedtime... but it's to love him!
Tuesday, July 12, 2011
"no bus!"
Ever struggled with the mixed emotions of putting your new student on the school bus for the first time? I'm a fairly protective Dad, and my work schedule allowed me to be there for 2 of my 3 older kid's first bus rides, so I can relate. They all did fine, like we knew they would. It's just hard to let go with that first independent step out into the big scary world.
But typically a kid is what... five or six years-old for that first bus ride?
How about two years and ten months?
"No bus... no bus... no go... no go!"
That is how Jen and I started this morning... buckling a crying not-yet-three-years-old Benny into a car seat on the county school bus at 7:30 in the morning. I watched (and listened) from the front of the bus, broken-hearted for my son, as Jen secured him toward the rear of the bus, handed him one of his favorite blankets, snapped a quick photo, and kissed him. She then turned around and walked down the bus aisle, without looking back. With eyes leaking, we both quietly walked down the driveway without watching the bus pull away... he was too short to see us out the window, anyway. We both agreed we were doing what was best for Benny, but that didn't make it easy!
As I mentioned in an earlier post, since last September, Benny has been attending early intervention preschool, two days per week, operated by our County Board of Developmental Disabilities. Although busing was available to us, he was just way too little for us to put him on that big bus for the 20 mile ride between our home and the school. So, Jen has been driving him the two days per week.
At first, the five hour school day was traumatic enough for him. He has never liked being separated from his Momma! Fortunately, he quickly adjusted and grew to like school. It became a happy, safe place for him, and one of the phrases he learned to say was, "go school". He has an excellent teacher, and the structured environment has been very good for him. More importantly, we feel he has made substantial progress since September.
Because the program is designed for developmental delay, they have school through the summer, so the kids don't lose ground. He had a three week break in June and he will get a two week break in August, at which point the "new" school year kicks off. It is expected that he will re-qualify for the upcoming school year, at which point his IEP moves him up to a full five day schedule.
Although it was a hard decision to put such a young one on the bus, Jen and I agreed that he could handle it, and that the time and financial strain of continuing to drive him five days, instead of two, was too much. We arranged for the busing to begin after the June break, to ease him into it before fall. He missed the first week back to school, because of illness. Last Thursday was his first day back, and Jen drove him in the morning and let the bus bring him home. He did pretty well. He arrived home with no tears, but he put his head on Jen's shoulder and said, "I sorry, I sorry", which to Benny likely meant, "that made me sad".
This morning was the first time the bus took him AWAY from Momma, rather than back TO her. It was a little more traumatic, but the driver told her he didn't cry too long. He knew (even though he cried about leaving) that he was doing something brave and big-boy-like. When he got home, Jen asked him, "did you ride the bus?" He smiled, and said, "uh-huh".
Don't ya hate it that doing what is best for your kids isn't always what is easy? (For them, or us!)
Love ya, Benny Jay! You're my favorite Benny in the whole world!
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But typically a kid is what... five or six years-old for that first bus ride?
How about two years and ten months?
"No bus... no bus... no go... no go!"
That is how Jen and I started this morning... buckling a crying not-yet-three-years-old Benny into a car seat on the county school bus at 7:30 in the morning. I watched (and listened) from the front of the bus, broken-hearted for my son, as Jen secured him toward the rear of the bus, handed him one of his favorite blankets, snapped a quick photo, and kissed him. She then turned around and walked down the bus aisle, without looking back. With eyes leaking, we both quietly walked down the driveway without watching the bus pull away... he was too short to see us out the window, anyway. We both agreed we were doing what was best for Benny, but that didn't make it easy!
As I mentioned in an earlier post, since last September, Benny has been attending early intervention preschool, two days per week, operated by our County Board of Developmental Disabilities. Although busing was available to us, he was just way too little for us to put him on that big bus for the 20 mile ride between our home and the school. So, Jen has been driving him the two days per week.
At first, the five hour school day was traumatic enough for him. He has never liked being separated from his Momma! Fortunately, he quickly adjusted and grew to like school. It became a happy, safe place for him, and one of the phrases he learned to say was, "go school". He has an excellent teacher, and the structured environment has been very good for him. More importantly, we feel he has made substantial progress since September.
Because the program is designed for developmental delay, they have school through the summer, so the kids don't lose ground. He had a three week break in June and he will get a two week break in August, at which point the "new" school year kicks off. It is expected that he will re-qualify for the upcoming school year, at which point his IEP moves him up to a full five day schedule.
Although it was a hard decision to put such a young one on the bus, Jen and I agreed that he could handle it, and that the time and financial strain of continuing to drive him five days, instead of two, was too much. We arranged for the busing to begin after the June break, to ease him into it before fall. He missed the first week back to school, because of illness. Last Thursday was his first day back, and Jen drove him in the morning and let the bus bring him home. He did pretty well. He arrived home with no tears, but he put his head on Jen's shoulder and said, "I sorry, I sorry", which to Benny likely meant, "that made me sad".
This morning was the first time the bus took him AWAY from Momma, rather than back TO her. It was a little more traumatic, but the driver told her he didn't cry too long. He knew (even though he cried about leaving) that he was doing something brave and big-boy-like. When he got home, Jen asked him, "did you ride the bus?" He smiled, and said, "uh-huh".
Don't ya hate it that doing what is best for your kids isn't always what is easy? (For them, or us!)
Love ya, Benny Jay! You're my favorite Benny in the whole world!
"no bus, no bus!"
"no go, no go" (morning)
Proud, tired boy after a long day... 7:30 to 4:00!
Wednesday, July 6, 2011
other side of Ponderosa
As a newer Dad, I prided myself on my young children's behavior. In general, when Dylan and Zachary were toddlers, we could take them just about anywhere, anytime, usually with compliments about how well they behaved themselves. Add Lily to the picture... similar results. I admit that when I would see others with unruly children, in my smugness, I would think negatively of them and their parenting skills. Hey, I got this!
Enter Benjamin.
Benny is a horse of a different color. Please understand that I am not intending to insult Benjamin. I'm just being real. He makes us feel like first-time parents, all over again. In fact, Benny often makes me feel like the other parents at which I used to sneer.
Benny is considered developmentally delayed. We're not sure, at this point, just what that means. Simply, what we do know is that in just about every developmental skill area, Benny lags well behind his age peers. His language and vocabulary are limited for his age, and his walking (which is usually more like running at full-tilt) is awkward, if not dangerous to his safety. He also currently has some sensory "issues" whereby he craves certain sensory stimulation (he needs more cuddles, hugs, holding, tickling, wrestling, etc.) and he is over-sensitive to certain noises and other sensory stimuli in ways that would not effect many others. Benny has some behavioral issues, is prone to tantrums, and in general, sometimes does not appear to listen to a thing we say! That translates to Benny needing nearly constant supervision during his waking hours... which can be exhausting!
I think some assume possibly he just "works" us because we are tired and worn down by parenting four children, or that we are much more lenient on him, because he is the "baby" of the family... the stereotype of the spoiled youngest child who gets away with anything. Possible. But, I don't think so... at least not totally. I attribute a lot of his behavioral issues to his delay in communication and, I believe, understanding. It is so hard to know for sure, and, while we need to curb the behavioral issues, I am reluctant to discipline him for something I am unsure he understands. It is a fine line. The problem is, we just don't understand Benny... with his delays and limited vocabulary/conversation, we have a hard time knowing what he does and does not understand.
Since this past fall, when he was barely two years-old, Benny has attended preschool, two days per week, operated by our County Board of Developmental Disabilities, and he has attended speech, physical, and occupational therapy sessions one day per week. We are pursuing some further evaluations, but the current thinking and goal is that he will "catch up" with his peers and be mainstreamed by school-age. In the meantime, though, life with Benny can have its stressful moments.
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Our visit to Ponderosa (last week) for Dylan's birthday was one such occasion. In hindsight, Benny was pretty sick with a virus and a high fever for about a week, beginning the day after our Ponderosa outing, so this could have contributed to his behavior. Regardless, in the lobby of the restaurant was a 4-H display, which included a glass case with toy tractors. Now, Benny currently loves tractors, and he got very excited when he spotted them. "Tractor, tractor, tractor! Wannit!" He began squirming to get free and run over to the tractors. I tried to explain to him that they were only to look at, but he didn't skip a beat... "Tractor, tractor, tractor! Wannit!"
I figured when we moved into the restaurant, he would quickly get distracted and forget about the "tractor, tractor, tractor". No such luck. Instead, he pitched a bigger fit, because he was removed further from his tractor goal. We tried to distract him with a few of his cars. No luck. We were starting to get some looks.
If he were Dylan or Zachary, at the same age, I would have sat them down and given them a few stern words, maybe threatened some form of discipline, and that would have probably been the end of it. But that requires a little logic, understanding, and thought processing skills that I truly believe (don't know for sure) that Benny does not yet have.
So, in the effort of not making too big of a scene, Jen suggested I try taking him into the restroom (on the other side of the restaurant) and try to calm him. I created a minor stir as I carried my "appearing-to-be-a-brat-but-things-aren't-always-what-they-seem" toddler through the restaurant to the restroom.
Remember those sensory issues we talked about?
Electric hand dryers. Benny hates 'em. The noise freaks him out. The mere sight of them (because they might turn on) freaks him out. His body trembles and he goes into a form of a panic attack. We forgot. Guess what was the first thing the already-upset little guy spied when we walked into the restroom? Electric hand dryers! Well, for the moment, we solved the "tractor, tractor, tractor" issue... now we are in full freak-out mode, "no, no, no!" (crying, kicking, screaming) to get away from the horrible hand dryer.
Now, with his little nerves totally fried, I have no choice but to get him away from the hand dryers... which empties me (the "we-assume-you-just-beat-your-poor-child" dad) back out into the restaurant with my "appearing-to-be-a-brat-but-things-aren't-always-what-they-seem-now-in-full-freak-out-mode" toddler, for another trip across the restaurant. Now, we're getting some looks!
Back at the table, Jen and I quickly decide we must use the divide and conquer strategy... I would take him outside, and restore the peace to the restaurant, while she scarfs down some food for birthday dinner, part I. Then, we'll switch places while I scarf down some food for birthday dinner, part II.
Fun.
Outside, the little guy continued to be upset. I held him and walked around the parking lot for quite a while, and I could slowly begin to feel the tension drain from his body. His tantrum-like crying turned to big shoulder-heaving sobs, as he came down off the emotional stress the incident caused him... well, actually, as WE came down off the emotional stress the incident caused US!
When he was relatively calm, he began asking for, "Momma, Momma, Momma". Each time he asked for her, I responded, "no crying". I couldn't be sure, but at some point I felt we had made a form of agreement together that we could go back in to see Momma if he didn't cry. I figured we already annoyed the whole place, what harm could come from trying it again?
I called Jen's cell phone and told her to come and let us in the BACK door. I had already paid for my meal, but to come through the front door would have brought us full-circle back to "tractor, tractor, tractor"! NOT going there!
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Back inside the restaurant, Benny was still a bit agitated and not too interested in food, but not making much of a scene. Benny loves crackers. So, in an effort to maintain some peace and salvage an enjoyable family outing, we raided the soup bar, and stuffed him full of saltines and ice cream!
What is the moral of this post? I'm not sure.
Maybe, it's just that I'm a blogger, and that's what bloggers do. We write. (Sometimes we'd rather write, than talk.) Sometimes we post for fun. Sometimes we post to vent. Sometimes we post to raise awareness. Sometimes we allow ourselves to be vulnerable and post as a form of catharsis.
In this case, I think it is the latter. I think it's to say what I couldn't tell all the people who stared at us in the restaurant. Something like, "This is my son, and I love him, but I don't always understand him, and I'm not sure, but I don't think he can help most of what is disturbing you." Or, if I'm being honest, it might also be to say, "We try to be good responsible parents who raise well behaved children... and we have gone out other times without disturbing the peace... we're just having a bad evening." Or, how about, "We're a family stressed and under various pressures, and we're occasionally going to risk disturbing you to get out and be together as a whole family, without leaving someone behind just because they may need a little extra effort".
Maybe the personal takeaway is to be a little less smug the next time I see a struggling parent in a public place.Hey, I got this! Hey, I been there!
Enter Benjamin.
Benny is a horse of a different color. Please understand that I am not intending to insult Benjamin. I'm just being real. He makes us feel like first-time parents, all over again. In fact, Benny often makes me feel like the other parents at which I used to sneer.
Benny is considered developmentally delayed. We're not sure, at this point, just what that means. Simply, what we do know is that in just about every developmental skill area, Benny lags well behind his age peers. His language and vocabulary are limited for his age, and his walking (which is usually more like running at full-tilt) is awkward, if not dangerous to his safety. He also currently has some sensory "issues" whereby he craves certain sensory stimulation (he needs more cuddles, hugs, holding, tickling, wrestling, etc.) and he is over-sensitive to certain noises and other sensory stimuli in ways that would not effect many others. Benny has some behavioral issues, is prone to tantrums, and in general, sometimes does not appear to listen to a thing we say! That translates to Benny needing nearly constant supervision during his waking hours... which can be exhausting!
I think some assume possibly he just "works" us because we are tired and worn down by parenting four children, or that we are much more lenient on him, because he is the "baby" of the family... the stereotype of the spoiled youngest child who gets away with anything. Possible. But, I don't think so... at least not totally. I attribute a lot of his behavioral issues to his delay in communication and, I believe, understanding. It is so hard to know for sure, and, while we need to curb the behavioral issues, I am reluctant to discipline him for something I am unsure he understands. It is a fine line. The problem is, we just don't understand Benny... with his delays and limited vocabulary/conversation, we have a hard time knowing what he does and does not understand.
Since this past fall, when he was barely two years-old, Benny has attended preschool, two days per week, operated by our County Board of Developmental Disabilities, and he has attended speech, physical, and occupational therapy sessions one day per week. We are pursuing some further evaluations, but the current thinking and goal is that he will "catch up" with his peers and be mainstreamed by school-age. In the meantime, though, life with Benny can have its stressful moments.
Our visit to Ponderosa (last week) for Dylan's birthday was one such occasion. In hindsight, Benny was pretty sick with a virus and a high fever for about a week, beginning the day after our Ponderosa outing, so this could have contributed to his behavior. Regardless, in the lobby of the restaurant was a 4-H display, which included a glass case with toy tractors. Now, Benny currently loves tractors, and he got very excited when he spotted them. "Tractor, tractor, tractor! Wannit!" He began squirming to get free and run over to the tractors. I tried to explain to him that they were only to look at, but he didn't skip a beat... "Tractor, tractor, tractor! Wannit!"I figured when we moved into the restaurant, he would quickly get distracted and forget about the "tractor, tractor, tractor". No such luck. Instead, he pitched a bigger fit, because he was removed further from his tractor goal. We tried to distract him with a few of his cars. No luck. We were starting to get some looks.
If he were Dylan or Zachary, at the same age, I would have sat them down and given them a few stern words, maybe threatened some form of discipline, and that would have probably been the end of it. But that requires a little logic, understanding, and thought processing skills that I truly believe (don't know for sure) that Benny does not yet have.
So, in the effort of not making too big of a scene, Jen suggested I try taking him into the restroom (on the other side of the restaurant) and try to calm him. I created a minor stir as I carried my "appearing-to-be-a-brat-but-things-aren't-always-what-they-seem" toddler through the restaurant to the restroom.
Remember those sensory issues we talked about?
Electric hand dryers. Benny hates 'em. The noise freaks him out. The mere sight of them (because they might turn on) freaks him out. His body trembles and he goes into a form of a panic attack. We forgot. Guess what was the first thing the already-upset little guy spied when we walked into the restroom? Electric hand dryers! Well, for the moment, we solved the "tractor, tractor, tractor" issue... now we are in full freak-out mode, "no, no, no!" (crying, kicking, screaming) to get away from the horrible hand dryer.
Now, with his little nerves totally fried, I have no choice but to get him away from the hand dryers... which empties me (the "we-assume-you-just-beat-your-poor-child" dad) back out into the restaurant with my "appearing-to-be-a-brat-but-things-aren't-always-what-they-seem-now-in-full-freak-out-mode" toddler, for another trip across the restaurant. Now, we're getting some looks!
Back at the table, Jen and I quickly decide we must use the divide and conquer strategy... I would take him outside, and restore the peace to the restaurant, while she scarfs down some food for birthday dinner, part I. Then, we'll switch places while I scarf down some food for birthday dinner, part II.
Fun.
Outside, the little guy continued to be upset. I held him and walked around the parking lot for quite a while, and I could slowly begin to feel the tension drain from his body. His tantrum-like crying turned to big shoulder-heaving sobs, as he came down off the emotional stress the incident caused him... well, actually, as WE came down off the emotional stress the incident caused US!
When he was relatively calm, he began asking for, "Momma, Momma, Momma". Each time he asked for her, I responded, "no crying". I couldn't be sure, but at some point I felt we had made a form of agreement together that we could go back in to see Momma if he didn't cry. I figured we already annoyed the whole place, what harm could come from trying it again?
I called Jen's cell phone and told her to come and let us in the BACK door. I had already paid for my meal, but to come through the front door would have brought us full-circle back to "tractor, tractor, tractor"! NOT going there!
Back inside the restaurant, Benny was still a bit agitated and not too interested in food, but not making much of a scene. Benny loves crackers. So, in an effort to maintain some peace and salvage an enjoyable family outing, we raided the soup bar, and stuffed him full of saltines and ice cream!Maybe, it's just that I'm a blogger, and that's what bloggers do. We write. (Sometimes we'd rather write, than talk.) Sometimes we post for fun. Sometimes we post to vent. Sometimes we post to raise awareness. Sometimes we allow ourselves to be vulnerable and post as a form of catharsis.
In this case, I think it is the latter. I think it's to say what I couldn't tell all the people who stared at us in the restaurant. Something like, "This is my son, and I love him, but I don't always understand him, and I'm not sure, but I don't think he can help most of what is disturbing you." Or, if I'm being honest, it might also be to say, "We try to be good responsible parents who raise well behaved children... and we have gone out other times without disturbing the peace... we're just having a bad evening." Or, how about, "We're a family stressed and under various pressures, and we're occasionally going to risk disturbing you to get out and be together as a whole family, without leaving someone behind just because they may need a little extra effort".
Maybe the personal takeaway is to be a little less smug the next time I see a struggling parent in a public place.
Friday, December 10, 2010
pudgee smudgees
I wear glasses. Everyday. All day. For the past 30-plus years.
I can (and do) tolerate some dust and dirt on my lenses. But, finger smudges are another story. They are intolerable... until lately.
I've been battling finger smudges on my lenses, recently, a bit more than normal. And, no, I'm not just suddenly getting careless in the handling of my glasses! Why, then?
Since Benny is developmentally delayed (I say that hesitantly, not wanting to insult or embarrass him), we are proud of him and praise him for things that parents of other children his age may just take for granted. He is making progress in his speech and motor skills, and enjoying going to preschool two days per week at our county MRDD school. It has been good for his development and he does well with the structure. The hope is still that he will catch up with his peers, but for now, all strides in development are encouraged and celebrated.
In this case, at 27 months, one of the recent new Benny activities is for him to point out and name both his and our "nose, eye and mmmm [mouth]". He does this often, then claps and says, "Yay!" (Because we clap and say, "Yay!") Of course, his goal is to actually touch (not just point to) the nose, eyes and mouth with his pudgee little finger!
Well... I think you see why this Dad often sports pudgee smudgees on his eyeglass lenses! But, they're only little for such a short time... I'll deal with a few smudges!
Love you, Benny J. You're my favorite Benny in the whole world!
I can (and do) tolerate some dust and dirt on my lenses. But, finger smudges are another story. They are intolerable... until lately.
I've been battling finger smudges on my lenses, recently, a bit more than normal. And, no, I'm not just suddenly getting careless in the handling of my glasses! Why, then?
Since Benny is developmentally delayed (I say that hesitantly, not wanting to insult or embarrass him), we are proud of him and praise him for things that parents of other children his age may just take for granted. He is making progress in his speech and motor skills, and enjoying going to preschool two days per week at our county MRDD school. It has been good for his development and he does well with the structure. The hope is still that he will catch up with his peers, but for now, all strides in development are encouraged and celebrated.
In this case, at 27 months, one of the recent new Benny activities is for him to point out and name both his and our "nose, eye and mmmm [mouth]". He does this often, then claps and says, "Yay!" (Because we clap and say, "Yay!") Of course, his goal is to actually touch (not just point to) the nose, eyes and mouth with his pudgee little finger!
Well... I think you see why this Dad often sports pudgee smudgees on his eyeglass lenses! But, they're only little for such a short time... I'll deal with a few smudges!
Love you, Benny J. You're my favorite Benny in the whole world!
Of course, everyone knows Lego tubs are for sitting in!
Daddy's footsteps?
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