My dad died two years ago today.
A couple of years ago I bought a hand held tape recorder to carry with me. There are so many times when my mind is wandering or I get ideas about things and am not able to write them down. Especially when I am driving. I haven't used the recorder in quite some time because I had filled the tape and kept forgetting to grab a new one. I pulled it out a few weeks ago to listen to what was on it.... the very first recording is on April 16th, 2010. Six months after my dad died. The recording was about my dad, his death. The fact that it was six months... it was a Friday. It was the 16th of the month. A "double whammy" as I called it in my recorded journal. The really ironic thing was.... the day I listened to that, a few weeks ago, was on my dad's birthday. I had no idea when I pressed the play button that that was what I was about to hear... Odd huh?
I had contemplated transcribing the recording here. My mind tends to zone in on certain parts of that recording more than other areas. I thought about it a lot. And decided against it as I really listened to it. Parts of it are too graphic. Other portions are just too personal. Screaming vulnerability. No thanks.
I wondered what I would write about today. What do I want to say? I never really said anything on this blog about my dad. Lots of reasons. My mind has been all over the board today. I finally decided I would just sit down and start typing.... see where my mind, my heart, takes us. Ha... talk about vulnerability.
My dad died 5 months after Rip died. I did blog about Rip's death. ( http://matt-amandaperry.blogspot.com/2009/05/rip-dennis.html ) I loved him so much and felt like I had been kicked in the chest when he died. Rip and I had a special relationship. I still miss him, ache for him. A lot.
When my dad died, Matt was at a client's in Ludington or Manistee. About an hour away. I knew when Matt called me.... one, from a land line... and two, at 930 in the morning.... that something was wrong. Matt's voice was shaking. This man, my husband, loves me more than life itself. Beyond words. Beyond what I ever knew was possible in life. And he is fiercely protective of me. And he had to tell me what had happened. There are a lot of things I don't remember about that conversation, about that day.... or some of the days that followed. But those words.... in my husband's shaken voice.... still ring clearly in my head. They always will.
One thing I realized during all of that is that Mary Margaret, Sally and I are married to three of the finest men in the world. They truly are amazing.
It seemed almost cruel that my dad died so soon after I lost Rip. I felt like the rug had been pulled out from underneath me. There are few things in life that one cannot truly comprehend unless they have experienced it first hand. Divorce is one of them. Losing a parent is another. There are no words to describe it. The anguish is literally physical. I felt sick. I couldn't breathe. I couldn't speak in a functional manner.
Our relationship was.... hmmm. Complicated. We weren't close. We would go years at a time with no contact. I often say..... sometimes God picks us up and plops us right where we don't want to be... for the sole purpose of forcing us to see that it is exactly where we need to be. April 2005 was one of those plopping moments. It was inevitable for us to see each other. I didn't want to be around him. There was no time for deep discussions and hashing out of old problems. But it was the moment for a door to open.
It was slow going. Physical distance didn't help that. There was some turning point along the way... maybe just for me... of unspoken understandings. Old problems didn't need to be discussed. I am fairly certain that he knew I forgave him for things. I am confident that he knew I loved him. I thank Jay for that reassurance.
At the risk of sounding cold hearted.... I don't miss him in the same ways that my sisters do. For me, there isn't the void that they feel on a daily basis. He and I didn't talk that often; it's hard to miss what wasn't there. They had such a different relationship with him... very different memories. That's only natural. They were with him every day of their lives. I do think about him a lot. And I am sad when I think about him not being here; thinking about what should have been. I smile at memories and I tear up at pictures. It's just different for me. I hope they understand what I mean by that.
So what do I think about when I think about him? Especially today? I think about....
He was happy in life. Finally. And deservedly so.
He was thrilled to have THREE grandsons... BOYS!
I know he loved me.
I loved his hair.
My sisters' hearts are breaking. They are strong girls though.
He never met Caelan. That breaks my heart.
I think about the last time I had talked to him. It was one of the most spontaneous phone calls in our relationship.
His laugh and how he sorta snorted when he did.
He always said "How 'bout that?" I have found that I say that a lot as well.
How he would sit at the kitchen table all by himself... for long periods of time. In his own little world. I always wondered what what in the world went through that man's head.
I remember certain conversations we had. Just the two of us.
He thought ironing was soothing.
I'm like him in more ways than I realized.
I don't have access to the few pictures (and they are few) that I have of him... especially of he and I together. So here are some links to check out.... Mary Margaret made slide show videos last year and this year. I couldn't find the link from the funeral.
http://www.youtube.com/watch?v=gkCEtoaYSE8&feature=BFa&list=UL0SNZOCdwmYc&lf=mfu_in_order
Sunday, October 16, 2011
Monday, October 3, 2011
One More Thing....
I have to explain about Caelan chewing on the comb in the video where he is singing "The Wheels on the Bus"
That is another aspect of all of the sensory processing problems. He puts EVERYTHING in his mouth now. He is constantly looking for something to chew on. (Seeking sensory input) It's not a bad thing... it's actually good. It just becomes a problem sometimes due to choking hazards, something I never have had to worry about. It is a need for him though.... telling him not to do it is not the solution. It is much more complex than that.
We are in the process of ordering some chewies for him.... they are specially designed for kids who have this type of need. The goal is to encourage him to chew on those or specific items that are "Okay" for him to chew instead of the couch pillows, rocks, combs, anything he can get his hands on....
That is all for now.... it's late. And we have to be up in the morning! Sleep well everyone!
That is another aspect of all of the sensory processing problems. He puts EVERYTHING in his mouth now. He is constantly looking for something to chew on. (Seeking sensory input) It's not a bad thing... it's actually good. It just becomes a problem sometimes due to choking hazards, something I never have had to worry about. It is a need for him though.... telling him not to do it is not the solution. It is much more complex than that.
We are in the process of ordering some chewies for him.... they are specially designed for kids who have this type of need. The goal is to encourage him to chew on those or specific items that are "Okay" for him to chew instead of the couch pillows, rocks, combs, anything he can get his hands on....
That is all for now.... it's late. And we have to be up in the morning! Sleep well everyone!
Changes.... "Caelan" (Part 2)
So.... I was given the name of a place called Children's Therapy Corner by someone and I gave them a call. I knew the moment I talked to Becky on the phone that this was a good thing. She was sooo supportive- she understood all my anxiety. So I set up a consultation appointment with them. Caelan and I met Julie who is the Speech and Language Therapist there and also heads up something called Play Project. Caelan interacted really well with her. So we set up appointments for evaluations at Children's Corner.
Their facility is a medical setting. The only down side of that is that we had to have a prescription from the pediatrician to move forward with evals and therapy sessions. Well that took a lot longer than anticipated.... long, irrelevant story. Anyway.. it took a little bit of time and we didn't get started with things until early August.
So they did speech and OT evaluations. Some of it was the same as the school as far as testing "tools." Matt and I went back for follow up and discussed the reports with the therapists. It was still difficult to hear them say that our son is as behind as he is. To hear reference to him being in an 18-24 month range in certain areas. Wow.
I have spent a lot of time over the past 5 or 6 months blaming myself. from the very get go of this whole process, all I could think was, "How did I miss this? How did I not see these problems?" or "What did I do wrong as a parent?" I have spent a significant amount of my life working with kids. I have taught, I have run after school programs, I have volunteered in children's hospitals and churches, I spent a summer working with special needs kids... I say all of that simply because, I have spent a LOT of time around a LOT of kids. One would think that I would recognize delays in development in my own kid. One would think. But I digress.... and I refuse to let myself get pulled into that lie. I know Satan likes to play on our emotions. Well, dear evil one... my son is not an area for you to play with.
Back on topic!! One of the best things about going to Children's Corner is that I understand things now on a whole different level. I get it.
Caelan has a sensory processing problem. That's kinda the very basic explanation. But it affects everything. His speech problems are more related to "motor planning" than anything. There are some mixed signals in his brain in the processing of language, sequencing, planning processes. the sensory aspect of everything has been AMAZING to learn about.
Kristine is my new hero. She is the occupational therapist. She likes to explain that we don't have 5 senses... we have 7. Yes, 7. You ever wonder why they teach us incorrectly in school? I mean, I remember finding out that Christopher Columbus didn't actually discover America and thinking, "Then why teach us that as kids?" And now to find out that we don't have just 5 senses, we have 7! Cool! Ok so it's not that simple. Well, we all know the basic 5 of sight, sound, taste, touch and smell. There is also vestibular and proprioception. Our balance and our sense of position.
Kids who have a sensory processing problem are usually either hypo or hyper in each area; under-sensitive or oversensitive. They respond in an abnormal way to basic stimuli. And because their senses don't respond normally to all that is around them, they behave differently. There is defensiveness in the system. Caelan is hypersensitive. He likes firm pressure and touch (hugs!) and he is very disturbed by some lighter touches. He "seeks" movement (swaying, jumping in his bed) but he doesn't like swings and slides or for his feet to leave the floor (remember the poor sense of position??) It also explains why is doesn't like pools. Like I said, I suddenly "get" all of this. There are things that he avoids because his sense of things is sooo way off and the body creates a defense mechanism. It's not that he just doesn't like swings and slides or water, his body screams to him that it is dangerous; it literally terrifies him. That is actually a very heartbreaking thing for me. To know that the basics in a kid's life are actually fearful for him. I just want him to be able to enjoy things in life. What therapy does is help the brain remap itself, to rework the pathways into a new understanding of things and therefore able to function differently.
All of this affects.... eating, sleeping (not for Caelan thank God!), interpretation of people/communication, play and physical activity, speech and language, daily functions, you name it.
All of that being said, we have been going to therapy sessions 3 times a week and already see huge changes in Caelan. (Makes me wonder how far along he would be if we could have started 3 months earlier.) There are steps backwards as well because there are changes, but overall it is good. Guess who went down the slides at the park the other day... yep! Our boy! I will definitely post some pictures and videos of that type of progress. He has also recently started singing songs.... another really big thing. Like I told Julie one day at speech, they're little things but they are such HUGE things.
Anyway... this post has already gotten extremely long. There is still so much more to explain about all of this. And because I am finally sharing all of this, I am just letting it all come tumbling out of my brain. It has been a roller coaster for the past several months. I see how Caelan has changed over the past 9 months or so... things that he used to enjoy but doesn't anymore, things that he is more sensitive to.... how some days are great and some days he is all out of sorts.
I am sure I will have many more ramblings on this subject. And all that comes with it. But for now, I think I have tossed an awful lot on your plates to start soaking in.
I will provide links to websites as well.
Their facility is a medical setting. The only down side of that is that we had to have a prescription from the pediatrician to move forward with evals and therapy sessions. Well that took a lot longer than anticipated.... long, irrelevant story. Anyway.. it took a little bit of time and we didn't get started with things until early August.
So they did speech and OT evaluations. Some of it was the same as the school as far as testing "tools." Matt and I went back for follow up and discussed the reports with the therapists. It was still difficult to hear them say that our son is as behind as he is. To hear reference to him being in an 18-24 month range in certain areas. Wow.
I have spent a lot of time over the past 5 or 6 months blaming myself. from the very get go of this whole process, all I could think was, "How did I miss this? How did I not see these problems?" or "What did I do wrong as a parent?" I have spent a significant amount of my life working with kids. I have taught, I have run after school programs, I have volunteered in children's hospitals and churches, I spent a summer working with special needs kids... I say all of that simply because, I have spent a LOT of time around a LOT of kids. One would think that I would recognize delays in development in my own kid. One would think. But I digress.... and I refuse to let myself get pulled into that lie. I know Satan likes to play on our emotions. Well, dear evil one... my son is not an area for you to play with.
Back on topic!! One of the best things about going to Children's Corner is that I understand things now on a whole different level. I get it.
Caelan has a sensory processing problem. That's kinda the very basic explanation. But it affects everything. His speech problems are more related to "motor planning" than anything. There are some mixed signals in his brain in the processing of language, sequencing, planning processes. the sensory aspect of everything has been AMAZING to learn about.
Kristine is my new hero. She is the occupational therapist. She likes to explain that we don't have 5 senses... we have 7. Yes, 7. You ever wonder why they teach us incorrectly in school? I mean, I remember finding out that Christopher Columbus didn't actually discover America and thinking, "Then why teach us that as kids?" And now to find out that we don't have just 5 senses, we have 7! Cool! Ok so it's not that simple. Well, we all know the basic 5 of sight, sound, taste, touch and smell. There is also vestibular and proprioception. Our balance and our sense of position.
Kids who have a sensory processing problem are usually either hypo or hyper in each area; under-sensitive or oversensitive. They respond in an abnormal way to basic stimuli. And because their senses don't respond normally to all that is around them, they behave differently. There is defensiveness in the system. Caelan is hypersensitive. He likes firm pressure and touch (hugs!) and he is very disturbed by some lighter touches. He "seeks" movement (swaying, jumping in his bed) but he doesn't like swings and slides or for his feet to leave the floor (remember the poor sense of position??) It also explains why is doesn't like pools. Like I said, I suddenly "get" all of this. There are things that he avoids because his sense of things is sooo way off and the body creates a defense mechanism. It's not that he just doesn't like swings and slides or water, his body screams to him that it is dangerous; it literally terrifies him. That is actually a very heartbreaking thing for me. To know that the basics in a kid's life are actually fearful for him. I just want him to be able to enjoy things in life. What therapy does is help the brain remap itself, to rework the pathways into a new understanding of things and therefore able to function differently.
All of this affects.... eating, sleeping (not for Caelan thank God!), interpretation of people/communication, play and physical activity, speech and language, daily functions, you name it.
All of that being said, we have been going to therapy sessions 3 times a week and already see huge changes in Caelan. (Makes me wonder how far along he would be if we could have started 3 months earlier.) There are steps backwards as well because there are changes, but overall it is good. Guess who went down the slides at the park the other day... yep! Our boy! I will definitely post some pictures and videos of that type of progress. He has also recently started singing songs.... another really big thing. Like I told Julie one day at speech, they're little things but they are such HUGE things.
Anyway... this post has already gotten extremely long. There is still so much more to explain about all of this. And because I am finally sharing all of this, I am just letting it all come tumbling out of my brain. It has been a roller coaster for the past several months. I see how Caelan has changed over the past 9 months or so... things that he used to enjoy but doesn't anymore, things that he is more sensitive to.... how some days are great and some days he is all out of sorts.
I am sure I will have many more ramblings on this subject. And all that comes with it. But for now, I think I have tossed an awful lot on your plates to start soaking in.
I will provide links to websites as well.
Changes.... "Caelan" (Part one... I had to break it down)
"Hmm.. what's going on?" you've wondered. Well, it depends on who you ask honestly. If you ask the school system they will tell you Caelan is in the Autistic Spectrum. And yes, I just threw the "A" word out there way too casually.... sorry for the shock factor. If you ask in a medical setting they describe Caelan as having sensory processing delays or problems. He is behind in speech and language, as well as some large and small motor areas.
I personally like the latter of the two explanations.
I'm going to jump around a bit. The current status is this-
Caelan is enrolled in the Early Childhood Program through the school system. He will get some Speech Therapy and Occupational Therapy there along with contact with an Autistic counselor.
We also have him involved at Children's Therapy Corner (LOVE these people) where he gets more intense, one on one Speech and Occupational Therapy. That is the short version of it.
So going backwards in time now... I will explain the full story of how we got here.
Back in the Spring, probably around March... Matt and I started noticing Caelan is behind in his speech. We noticed this as we Skyped with my sisters one night and how well their boys (who are 5 months younger than Caelan) spoke and communicated. We looked at each other with the same look of "hmm.. are you noticing that difference too?" But we didn't talk too much about it. About the same time, a 'newer' friend of mine whom I had only known for a few months, asked me if Caelan talks at all or if he is nonverbal. I was shocked! She had to be kidding me! He talks from the time he wakes up until the time he goes to bed. Literally. So I asked our sitter if Caelan talks over there.... they replied, "No, not really. His needs are met; he will mimic what we say but...." Once again, shock factor for me!
He has always talked around us AND Matt's parents. We understand him. Mostly because we are around him all the time and understand his speech patterns and there is usually context to help. He hit a "shy" phase in January or so as well. He became much more timid in large settings, around people, new things.
So based on these discoveries about his speech and all, I decided to talk to his pediatrician.... she sent us for a speech eval. It honestly didn't go real well, Caelan wasn't very cooperative in the environment. I set up appointments... then found out that insurance woudn't cover it until he is 6 years old.... yes, SIX! I yelled at the poor girl in the insurance company who didn't have any control over that info... she was just the messenger. And I shot her. In spite of the old saying of not doing so.
So I cancelled all the appointments and sat in frustration about what steps to take. Abbi mentioned checking through the school system and the "Early On" program. So I set all that up. Someone came to the house, got a lot of history on Caelan, played with him.... a couple of weeks later the Speech and Occupational Therapists through the school also came over and interacted a bit. So we set up an appointment at their facility for a full evaluation. When I walked in, there were four people there (ST, OT and two new ones) and all of a sudden they are talking about Autism. I was there with Caelan.... after working a midnight shift, no sleep. I suddenly felt like I was in a tunnel. Their lips moved. I couldn't hear them. I was still stuck in another moment of time. Stuck in the word, THAT word. Once I found my breath (which I needed to do because I was feeling a little dizzy from the last sharp intake of air that I took and hadn't released yet), I stopped them mid-sentance. "How did we go from speech evaluations to talking about Autism??" I could tell from the glances around the room, that someone forgot to discuss everything with me. Each of them thought the other had already filled me in. They recovered well. Tina (I like her a lot.... she is the Speech therapist) knew how to get me back into the present time.
Once I got past this point, we were there for about three hours. They did a lot of standardized testing. Then we talked. In hindsight I understand some things a lot more than I did in the moment. One of those things is that the school system works in more of a "check box" system. "Does this child qualify for special assistance? Yes or No?" (check mark Yes). "If yes, what are the qualifiers?" Well, how about the fact that he failed (for a lack of better word) all the testing. The Speech and Occupational evals, the ADOS (Autistic Diagnostic Observation something or other) was off the chart.... Next on the checklist, "Which category? Autistic Spectrum or Developmentally Delayed?" Boy I love those options. Caelan was slotted into Autistic Spectrum Disorder.
People who know our son... who know our son, who have been around him since the day he was born... immediately shake their heads and say, "What?!? He is not autistic!!"
As the protective mother bear.... I agree. How dare they! As an open-minded, do what is best for my child, mom.... I read the reports and took a harsh look at things.
And I still wasn't sure.
He is a very, very loving child who loves to hug and snuggle. He makes eye contact. He talks (to us at least). He is really smart. He was an easy baby and is a very laid back little boy. He is happy.
He also... doesn't respond to his name all the time. He doesn't respond normally to sounds around him. He is fascinated with numbers and letters and shapes. He doesn't like slides or swings. He jumps... a lot. He sways from foot to foot. He doesn't call out to us in the same way that other kids do with their parents. He likes to watch things spin. He doesn't know what to do with toys other than "its intended purpose" He has an unusually long attention span for a child his age. He....
.. is my baby. My sweet, precious child. Who is smart and likes numbers and letters and books.... so? He likes to jump... so?
I was so torn. I couldn't deny a lot of what was pointed out to me. I spent a summer in 1998 with autistic kids. I see some of these "red flags." But I also don't see some of it.
So the agreement was to start him in Special Ed, Early Childhood Program this Fall. Which I did. It goes against everything I wanted to do, everything I believed in. But I did it.
But the problem was.... this all took place in early June. All of this was dumped in my lap with a nice big bow and a "Have a great summer, we will see you in September!"
WHAT???!!?? What am I supposed to DO?? What about NOW? What about the next four MONTHS??
So... enter next post.... Children's Therapy Corner. (Did I mention that I love these people??? good.)
I have to get ready for Caelan to come home.... I will complete this whole story. I told you it was long...
I personally like the latter of the two explanations.
I'm going to jump around a bit. The current status is this-
Caelan is enrolled in the Early Childhood Program through the school system. He will get some Speech Therapy and Occupational Therapy there along with contact with an Autistic counselor.
We also have him involved at Children's Therapy Corner (LOVE these people) where he gets more intense, one on one Speech and Occupational Therapy. That is the short version of it.
So going backwards in time now... I will explain the full story of how we got here.
Back in the Spring, probably around March... Matt and I started noticing Caelan is behind in his speech. We noticed this as we Skyped with my sisters one night and how well their boys (who are 5 months younger than Caelan) spoke and communicated. We looked at each other with the same look of "hmm.. are you noticing that difference too?" But we didn't talk too much about it. About the same time, a 'newer' friend of mine whom I had only known for a few months, asked me if Caelan talks at all or if he is nonverbal. I was shocked! She had to be kidding me! He talks from the time he wakes up until the time he goes to bed. Literally. So I asked our sitter if Caelan talks over there.... they replied, "No, not really. His needs are met; he will mimic what we say but...." Once again, shock factor for me!
He has always talked around us AND Matt's parents. We understand him. Mostly because we are around him all the time and understand his speech patterns and there is usually context to help. He hit a "shy" phase in January or so as well. He became much more timid in large settings, around people, new things.
So based on these discoveries about his speech and all, I decided to talk to his pediatrician.... she sent us for a speech eval. It honestly didn't go real well, Caelan wasn't very cooperative in the environment. I set up appointments... then found out that insurance woudn't cover it until he is 6 years old.... yes, SIX! I yelled at the poor girl in the insurance company who didn't have any control over that info... she was just the messenger. And I shot her. In spite of the old saying of not doing so.
So I cancelled all the appointments and sat in frustration about what steps to take. Abbi mentioned checking through the school system and the "Early On" program. So I set all that up. Someone came to the house, got a lot of history on Caelan, played with him.... a couple of weeks later the Speech and Occupational Therapists through the school also came over and interacted a bit. So we set up an appointment at their facility for a full evaluation. When I walked in, there were four people there (ST, OT and two new ones) and all of a sudden they are talking about Autism. I was there with Caelan.... after working a midnight shift, no sleep. I suddenly felt like I was in a tunnel. Their lips moved. I couldn't hear them. I was still stuck in another moment of time. Stuck in the word, THAT word. Once I found my breath (which I needed to do because I was feeling a little dizzy from the last sharp intake of air that I took and hadn't released yet), I stopped them mid-sentance. "How did we go from speech evaluations to talking about Autism??" I could tell from the glances around the room, that someone forgot to discuss everything with me. Each of them thought the other had already filled me in. They recovered well. Tina (I like her a lot.... she is the Speech therapist) knew how to get me back into the present time.
Once I got past this point, we were there for about three hours. They did a lot of standardized testing. Then we talked. In hindsight I understand some things a lot more than I did in the moment. One of those things is that the school system works in more of a "check box" system. "Does this child qualify for special assistance? Yes or No?" (check mark Yes). "If yes, what are the qualifiers?" Well, how about the fact that he failed (for a lack of better word) all the testing. The Speech and Occupational evals, the ADOS (Autistic Diagnostic Observation something or other) was off the chart.... Next on the checklist, "Which category? Autistic Spectrum or Developmentally Delayed?" Boy I love those options. Caelan was slotted into Autistic Spectrum Disorder.
People who know our son... who know our son, who have been around him since the day he was born... immediately shake their heads and say, "What?!? He is not autistic!!"
As the protective mother bear.... I agree. How dare they! As an open-minded, do what is best for my child, mom.... I read the reports and took a harsh look at things.
And I still wasn't sure.
He is a very, very loving child who loves to hug and snuggle. He makes eye contact. He talks (to us at least). He is really smart. He was an easy baby and is a very laid back little boy. He is happy.
He also... doesn't respond to his name all the time. He doesn't respond normally to sounds around him. He is fascinated with numbers and letters and shapes. He doesn't like slides or swings. He jumps... a lot. He sways from foot to foot. He doesn't call out to us in the same way that other kids do with their parents. He likes to watch things spin. He doesn't know what to do with toys other than "its intended purpose" He has an unusually long attention span for a child his age. He....
.. is my baby. My sweet, precious child. Who is smart and likes numbers and letters and books.... so? He likes to jump... so?
I was so torn. I couldn't deny a lot of what was pointed out to me. I spent a summer in 1998 with autistic kids. I see some of these "red flags." But I also don't see some of it.
So the agreement was to start him in Special Ed, Early Childhood Program this Fall. Which I did. It goes against everything I wanted to do, everything I believed in. But I did it.
But the problem was.... this all took place in early June. All of this was dumped in my lap with a nice big bow and a "Have a great summer, we will see you in September!"
WHAT???!!?? What am I supposed to DO?? What about NOW? What about the next four MONTHS??
So... enter next post.... Children's Therapy Corner. (Did I mention that I love these people??? good.)
I have to get ready for Caelan to come home.... I will complete this whole story. I told you it was long...
Subscribe to:
Posts (Atom)