Here is a video from FOX Toledo news from last night, July 30, 2009 featuring the Golf Camp Nick participated in and is now working in for The Ability Center Project GAIN. Nick is featured at the end of the story. Short but we loved it! I talked about the Golf Camp in one of my previous posts.
http://www.foxtoledo.com/dpp/sports/wupw_A_very_special_golf_camp_073009
Friday, July 31, 2009
Monday, July 27, 2009
Pictures
Here are some more pictures of the Jets (Nick's baseball team) and Nick with his service dog, Charger, from Assistance Dogs of America, and golf camp in June 09 . Also a pic of Nick with his sister and cousins, Chloe, Theo, and Maddie at his ADAI graduation April 09. Hope you enjoy them. AmyNick's baseball game yesterday
The GREATEST thing happened at Nick's baseball game yesterday! Nick plays challenger league baseball for The Jets/The Greater Toledo Challenger League. He's played for the past 10 years or so.
Yesterday, Nick decided not to use his wheelchair as it is broken and we are waiting for his new chair. Greg worked yesterday so we couldn't bring Nick's Segway ( I can't lift it in our van by myself!) and so he used his walker to get to the field.
THEN he just decided, first time ever, to leave his walker and he walked out to the field on his own and he hit the ball on his knees, stood up all by himself, steadied himself and walked all of the bases on his own, no walker, no help, anything! I was so "in the moment", cheering, trying not to cry, yelling, etc., I never got any pictures of this, but here are a few pics of us yesterday. Notice he is standing up, all by himself in pics with me and Isabella. (and he's taller than me!) So amazing! In the other pic, he is on his knees, throwing the ball with my Dad and his friend Jessie before the game. After he did this, he stood over home plate and told me he said a prayer, thanking God that he could do that and for the game, and "dedicating" the game to his Dad (who missed it because he had to work) because his Dad has held Nick in his arms for the past 10 years, running the bases as Nick's "legs" because Nick wanted to feel what it was like to run without his chair or walker. That really touched me. I thought, how SWEET is that? WOW, all I can say is WOW! What a memorable day!
Life is good! Amy
Length of last post........
I know my last post was LONG. Not all of them will be that long, I promise! My plan is to share some current things and some past. Some of the past stories may be longer, but not all, I promise! Thanks! Amy
Saturday, July 25, 2009
Early Memories and following your intuition.......
August of 1993 was a HOT month. We had just moved back to Ohio from the Detroit Area where Greg and I had been living and working for the past three years. We moved back for many reasons and were staying with my parents temporarily until we could get on our feet and find our own place. Greg was still working in the Detroit Area and commuting every day, 6 days a week. We were SO fortunate that our parents offered for us to stay with them and little did I know how much we were going to need this for many reasons.
I was 8 months pregnant and as I said, it was HOT. The air conditioning in my parents' home was out that summer too! The night of August 17th, I still had about 5 weeks to go until my due date. My pregnancy was going well, easy, no problems. Greg's grandfather's birthday was August 17th. He died a week after our wedding in 1990. We called Greg's Granny in Michigan to see how she was going that day. She jokingly said something like, I'll give you $5 if you have the baby tonight, PaPa's birthday. (she was joking!) Greg and I were home alone, my parents went out to dinner with family in Port Clinton. About five minutes after talking to Greg's Granny, my water broke! We were off to the hospital, excited, and a little nervous because this was our first and it was a little early. It wasn't long before our family joined us. After an easy 8 hour labor, Nick was born the morning of August 18th, healthy, a good weight, and we were all doing great. I remember Greg saying, "that's my boy" when he was watching Nick in the nursery. By the next day, we were sent home. Nick was a little jaundiced, which the discharge nurse pointed out to us, but told us this was normal for a breast-fed baby, and to just take him out in the sun. No one seemed worried, so we were not worried. We took Nick home and did just what they said. We have pictures of us taking him for a walk outside. As the week went on, Nick seemed to be eating ok, but not great. We were in that new parent sleepless "fog" of feedings, changings, etc.
The only thing I really remember is sitting in the rocking chair, early one morning. Greg was getting ready to go to work in Michigan. It was an hour an a half drive or so each way. I got this sick feeling in my stomach and felt like something was not right. Nicholas seemed so tired and I couldn't get him to eat well. We had called and had an appointment scheduled at the doctor the next week and the nurse did not seem worried when we called and told them about this a few days earlier. This feeling just hit me all of a sudden, panic. I called the doctor's office when they opened and was waiting for the doctor to call me back. He came highly recommended by people we knew and he was very "laid back" according to some people we knew, but they really liked him. I didn't wait more than a few minutes and I called my mom shortly after she arrived at work. I told her I was waiting for the doctor to call and that something did not seem right. She rushed home and took us to the emergency room. I remember they took one look at Nick and took him back immediately. I heard the nurse talking to someone and she said she had called Nick's doctor to tell him he was in the ER and the doctor apparently was not happy ("yelled") and said they he had not told us to come there. ( I heard the nurse in the ER say this.) It was a whirlwind from there, questions, tests, Nick had an IV in his tiny little head. He was dehydrated and having seizures, which I did not recognize. We were told he was very ill and may not make it, and was admitted to the NICU. I remember being there thinking, how did this happen and what is going on? I just wanted to hold my baby and I couldn't because he was so sick. The hospital gave us a room to stay at the hospital so I never left from that day on. After more tests, Greg and I were called into our room by two nurses in the NICU. They shut the door. They wanted to tell us that Nicholas was showing signs of brain damage and wanted to make sure we knew what that meant. I had worked with individuals with disabilities and my mind went to the worst case scenario. I just cried and screamed. After an MRI, it was confirmed that Nicholas had brain damage from the jaundice, hyperbiliruminemia, was having myoclonic seizures. We were introduced to Nicholas neurologist who is still his neurologist today. Nick was in the hospital for some time and after he was discharged, we went home to my parent's house, where my mother had gotten a bedroom together as a nursery for Nick, something I had not had the time to completely finish as we'd just moved back to Ohio and then spent the last several weeks at the hospital.
The following months were a blur. We were referred to an early intervention program in our area and I took Nick for an assessment. I remember walking into the building and there was another parent to greet me. She had a daughter with Downs Syndrome and her daughter held Nicholas while I took my coat off and got settled. A team of people assessed Nick. He was eligible for early intervention services as he had delays in many areas.
For those of you who don't know, Early intervention (EI) is available for children with or without disabilities from birth through age two. EI is family-centered, focusing on the overall needs of the family to provide the best developmental environment for the child. An Individualized Family Service Plan (IFSP) is required for a child enrolled in an early intervention program. The EI programs are required through Part C of the Individuals with Disabilities Education Improvement Act (IDEA) and are administered by the Ohio Department of Health through its Help Me Grow program. Every state offers EI services though. Our EI services were offered by our local Board of Mental Retardation and Developmental Disabilities (MR/DD). Anyhow, we were assigned an Early Intervention Specialist (EIS). We had a nurse coming to the house weekly, and occupational therapist coming to the house to help us with feeding, etc., (Nick had trouble sucking a bottle or anything..........), a respiratory therapist for his apnea monitor as Nick stopped breathing frequently, and the EIS. We had people at the house at least four days a week and Nick was having constant seizures. We were just really in minute to minute survival mode, literally. The daily care was all-consuming and Greg had to work, as did my parents. They all helped out of course when they could when they were home, but I was the one who was home so I primarily took care of Nick. During this time too, I was trying to get to know Nick and have that "normal" bonding time, taking pictures, reading books, finding toys he liked. He was in and out of the hospital for seizure monitoring. We didn't have much time to think or do anything else but get through each day.
We had so many medical bills and doctor and therapy appointments! On December 7, 1993, when Nick was not quite four months old, I took him to the neurologist office for a follow up appointment. We liked this neurologist, still do. He's one of the best in our area. I waited with Nick (with the diaper bag, apnea monitor going off, trying to feed and change him, having seizures) in the waiting room for three hours. During that time, I remember a patient came in ( a parent and child) and they were five minutes late. They were told they'd have to reschedule and come back another time. I remember thinking how long I and others had been waiting for this doctor and then this is how they treated a patient who was five minutes late? When we finally got in, I told the doctor and nurse that I waited because he is a good doctor but his office staff was terrible. He apologized and explained to me he had a surgery and he tries to spend a lot of time with each patient. I really liked the way he spoke to me and explained things. You know, to this day, I still tell him that because we always have to wait FOREVER. We know to pack a snack, things to do, etc. when we go. Because we like him and there aren't many other options, we stick with him. Anyhow, he always spends a lot of time with Nick and us and seems to really care and listen. After examining Nick that day in 1993, I remember thinking Nick was "getting better" as he was "so strong". The doctor could hold him on his hand and Nick was stiff as a board. I soon learned that was not a good thing. I was getting Nick dressed. The doctor was writing in his chart and turned to me and said, " I want you to know, because I know you are a smart Mom and you read his chart ( I read the doctor's notes in his charts, I do, and there is a reason for that which I may talk about later!), I am diagnosing him with athetoid cerebral palsy, quadriplegia". I heard what he said, I was dressing Nick and said to him, "Isn't this outfit cute, my mom got it for him?" He asked me if I wanted to go into his office and talk about this more or if I had any questions. I said no and got out of the office as soon as possible. I had heard of cerebral palsy, but didn't really know anything about it at all. I started to get this lump in my throat, burning, and a feeling like someone was sitting on my chest on my way out of the building into the parking garage. I was carrying Nick, my baby, looking at him, and I couldn't speak when I tried to say something to him as he looked at me. Nothing could come out. I was sweating and could not breathe. I passed several people in the building and in the garage. People were talking, laughing, one smiled at me. I remember thinking, "this is what it feels like in the twilight zone" because I couldn't believe everyone was going on with their business as usual and I had my baby in my arms and he has cerebral palsy, brain damage, and I didn't know what that meant, but I knew it wasn't good. I was so angry and I felt like screaming but I didn't want to scare Nick or cause a scene. I didn't even realize it but huge tears were streaming down my face and my face was hot. I only realized it when I had trouble seeing. I got us in the car and drove home. My mom was home from work that day to wrap Christmas presents, etc. She had asked if I needed her to go to the appointment with me but I had told her no because it was just a follow up, I wasn't expecting anything new. She looked at me and knew something was wrong. I handed Nick to her and just said, "he has cerebral palsy" and left the room. I could hear here saying "no" and crying as I went upstairs. My Mom called Greg and told him and he came home. She called my friends and our family, the church and told them the news. I called our EIS and asked for info. on CP. That night, the doctor called and spoke to Greg. He knew I wasn't registering what he said and he was unsettled by my reaction. We set up an appointment to go into his office and talk to him to get more information and we did. The next month, we got a letter from our insurance company stating they would no longer pay for Nick's therapy (OT/PT?speech) because he was "non-restorable", a direct quote, because of his diagnosis and that is was a "chronic condition" that could not be cured". We spent the next two years, fighting our insurance company, hours on the phone, writing letters, appeals, up to the State Board of Insurance. When Nick was two years old, they finally agreed to pay for a certain number of visits.
What did we do during that time? Most people who know about CP know that even though it can't be "cured", it is "managed" and through therapy, especially during the early years, development can be maximized in every area. Some studies even say that brain cells can be repaired during that time. The bottom line is, if there is no early intervention, the outcome will be as good. So, we turned to our early intervention program for help. They had already been involved, but we showed them the letters from insurance so they provided those services for us. During this time too, I had to go back to work, because we NEEDED the insurance badly. After going to 17, yes I said 17, daycare centers and childcare providers, I finally found one center that said, sure come in, we'd like to try to make this work. So, even though it was agonizing for me as a mother of a baby with all of these issues, to go to work, we had to try to make this work. We met with the early intervention program, the EIS, the therapist, and the daycare staff. We had meetings at 7:30 am because they were trying to accommodate my work schedule and have everyone at the meetings who needed to be there. My family usually came too. We had Nick's IFSP (Individual Family Service Plan) meetings there every three months, but communicated daily or weekly. The early intervention staff provided support, information, and guidance to the daycare center to make things work for Nick and have him included as much as possible. He was. They learned how to care for him, feed him, give him his meds, position him. The EI staff provided a special corner chair that they had graduate students make for Nick so he could sit up and hold his head up to eat and for all activities. They provided other equipment as well. They OT from the EI program (who is still Nick's OT today, as she opened a therapy program with a colleague) made Nick's first pair of AFOs )Ankle Foot Orthotics with a grad student and with orders from Nick's orthopedic surgeon. When problems or issues came up, and they did, they helped to solve them with us and the center. The EIS visited Nick at the daycare once a week to work with him and the OT came with her at least twice a month. They had someone video-tape the sessions so Greg and I (and our family) could see them and know what they were doing if I couldn't make it there on my lunch hour. They helped us to make this work for our family. I get chills when I think about how much they did for Nick and us.
I read every book I could get my hands on and I (and Greg) educated ourselves about cerebral palsy and what Nick needed. This is when we started becoming "experts" on Nick and Nick's particular needs. CP has a wide-range of functioning levels, so it is different for everyone. We were told by three different doctors during this time that Nick would never walk and would have mental retardation. We thought, "ok, if that is the case, it is, but how do you know for sure?" We decided to let Nick show us what he could do. We made sure he got all of the therapy and equipment he needed. We did everything we could do. He started to do things, like hold his head up, learn to sit up by himself, stand in a standing device. True it was later than most kids, but we knew he was determined. We also knew he was trying to talk and tell us more things. He could point to the alphabet correctly, randomly, not in order, and consistently before he spoke. One professional said to us, "is this overly=hopeful parents speaking or can he really do this?" We thought, Nick, you show them and us what you can do. He did. We knew, even before they could "test" him that he did not have cognitive delays based on what he communicated to us, verbally and non-verbally. We consistently saw that Nick was SO FRUSTRATED because he wanted to say something or do something physically and his body was just not cooperating. It was heart-breaking to watch but also made us more determined than ever to advocate for Nick in any way possible.
I'll write more later, but this idea of advocating, had been a regular part of our lives ever since those early days. It comes from Nick and watching him "SHOW" us what he can do, what he wants to do, and we want to make sure he has the opportunities in life to do the things he wants to do. Not only that, we want him to have MEANINGFUL relationships and experiences. We want that for Nick and Bella both. We are no different than other parents who want the world for their kids!
Finally, going back to that time when I was sitting in the rocking chair and I just knew something was not right, I have often looked back and thought "what if I didn't listen to the nurses and just took him to the hospital sooner, or what if I had a medical background and would have known there was a problem, what if..........". I try not to do that anymore. They lesson we learned the VERY hard way is always listen to your intuition, and definitley when it comes to your children. You can never go back and change things. I don't know if I could have changed this, but you can never go back. I ALWAYS listen to my intuition now, even if the doctor or someone else thinks I'm over-reacting, I don't care. If I don't like a doctor or professional working with my children, I won't hesitate to make a change. I don't want others to learn this lesson the hard way, so maybe by sharing our story, someone will learn to trust their intuition! It's always better to be safe and even if it is "over-reacting", it's better than paying the price if you don't listen to your intuition and something bad happens. Trust me on this one.
I was 8 months pregnant and as I said, it was HOT. The air conditioning in my parents' home was out that summer too! The night of August 17th, I still had about 5 weeks to go until my due date. My pregnancy was going well, easy, no problems. Greg's grandfather's birthday was August 17th. He died a week after our wedding in 1990. We called Greg's Granny in Michigan to see how she was going that day. She jokingly said something like, I'll give you $5 if you have the baby tonight, PaPa's birthday. (she was joking!) Greg and I were home alone, my parents went out to dinner with family in Port Clinton. About five minutes after talking to Greg's Granny, my water broke! We were off to the hospital, excited, and a little nervous because this was our first and it was a little early. It wasn't long before our family joined us. After an easy 8 hour labor, Nick was born the morning of August 18th, healthy, a good weight, and we were all doing great. I remember Greg saying, "that's my boy" when he was watching Nick in the nursery. By the next day, we were sent home. Nick was a little jaundiced, which the discharge nurse pointed out to us, but told us this was normal for a breast-fed baby, and to just take him out in the sun. No one seemed worried, so we were not worried. We took Nick home and did just what they said. We have pictures of us taking him for a walk outside. As the week went on, Nick seemed to be eating ok, but not great. We were in that new parent sleepless "fog" of feedings, changings, etc.
The only thing I really remember is sitting in the rocking chair, early one morning. Greg was getting ready to go to work in Michigan. It was an hour an a half drive or so each way. I got this sick feeling in my stomach and felt like something was not right. Nicholas seemed so tired and I couldn't get him to eat well. We had called and had an appointment scheduled at the doctor the next week and the nurse did not seem worried when we called and told them about this a few days earlier. This feeling just hit me all of a sudden, panic. I called the doctor's office when they opened and was waiting for the doctor to call me back. He came highly recommended by people we knew and he was very "laid back" according to some people we knew, but they really liked him. I didn't wait more than a few minutes and I called my mom shortly after she arrived at work. I told her I was waiting for the doctor to call and that something did not seem right. She rushed home and took us to the emergency room. I remember they took one look at Nick and took him back immediately. I heard the nurse talking to someone and she said she had called Nick's doctor to tell him he was in the ER and the doctor apparently was not happy ("yelled") and said they he had not told us to come there. ( I heard the nurse in the ER say this.) It was a whirlwind from there, questions, tests, Nick had an IV in his tiny little head. He was dehydrated and having seizures, which I did not recognize. We were told he was very ill and may not make it, and was admitted to the NICU. I remember being there thinking, how did this happen and what is going on? I just wanted to hold my baby and I couldn't because he was so sick. The hospital gave us a room to stay at the hospital so I never left from that day on. After more tests, Greg and I were called into our room by two nurses in the NICU. They shut the door. They wanted to tell us that Nicholas was showing signs of brain damage and wanted to make sure we knew what that meant. I had worked with individuals with disabilities and my mind went to the worst case scenario. I just cried and screamed. After an MRI, it was confirmed that Nicholas had brain damage from the jaundice, hyperbiliruminemia, was having myoclonic seizures. We were introduced to Nicholas neurologist who is still his neurologist today. Nick was in the hospital for some time and after he was discharged, we went home to my parent's house, where my mother had gotten a bedroom together as a nursery for Nick, something I had not had the time to completely finish as we'd just moved back to Ohio and then spent the last several weeks at the hospital.
The following months were a blur. We were referred to an early intervention program in our area and I took Nick for an assessment. I remember walking into the building and there was another parent to greet me. She had a daughter with Downs Syndrome and her daughter held Nicholas while I took my coat off and got settled. A team of people assessed Nick. He was eligible for early intervention services as he had delays in many areas.
For those of you who don't know, Early intervention (EI) is available for children with or without disabilities from birth through age two. EI is family-centered, focusing on the overall needs of the family to provide the best developmental environment for the child. An Individualized Family Service Plan (IFSP) is required for a child enrolled in an early intervention program. The EI programs are required through Part C of the Individuals with Disabilities Education Improvement Act (IDEA) and are administered by the Ohio Department of Health through its Help Me Grow program. Every state offers EI services though. Our EI services were offered by our local Board of Mental Retardation and Developmental Disabilities (MR/DD). Anyhow, we were assigned an Early Intervention Specialist (EIS). We had a nurse coming to the house weekly, and occupational therapist coming to the house to help us with feeding, etc., (Nick had trouble sucking a bottle or anything..........), a respiratory therapist for his apnea monitor as Nick stopped breathing frequently, and the EIS. We had people at the house at least four days a week and Nick was having constant seizures. We were just really in minute to minute survival mode, literally. The daily care was all-consuming and Greg had to work, as did my parents. They all helped out of course when they could when they were home, but I was the one who was home so I primarily took care of Nick. During this time too, I was trying to get to know Nick and have that "normal" bonding time, taking pictures, reading books, finding toys he liked. He was in and out of the hospital for seizure monitoring. We didn't have much time to think or do anything else but get through each day.
We had so many medical bills and doctor and therapy appointments! On December 7, 1993, when Nick was not quite four months old, I took him to the neurologist office for a follow up appointment. We liked this neurologist, still do. He's one of the best in our area. I waited with Nick (with the diaper bag, apnea monitor going off, trying to feed and change him, having seizures) in the waiting room for three hours. During that time, I remember a patient came in ( a parent and child) and they were five minutes late. They were told they'd have to reschedule and come back another time. I remember thinking how long I and others had been waiting for this doctor and then this is how they treated a patient who was five minutes late? When we finally got in, I told the doctor and nurse that I waited because he is a good doctor but his office staff was terrible. He apologized and explained to me he had a surgery and he tries to spend a lot of time with each patient. I really liked the way he spoke to me and explained things. You know, to this day, I still tell him that because we always have to wait FOREVER. We know to pack a snack, things to do, etc. when we go. Because we like him and there aren't many other options, we stick with him. Anyhow, he always spends a lot of time with Nick and us and seems to really care and listen. After examining Nick that day in 1993, I remember thinking Nick was "getting better" as he was "so strong". The doctor could hold him on his hand and Nick was stiff as a board. I soon learned that was not a good thing. I was getting Nick dressed. The doctor was writing in his chart and turned to me and said, " I want you to know, because I know you are a smart Mom and you read his chart ( I read the doctor's notes in his charts, I do, and there is a reason for that which I may talk about later!), I am diagnosing him with athetoid cerebral palsy, quadriplegia". I heard what he said, I was dressing Nick and said to him, "Isn't this outfit cute, my mom got it for him?" He asked me if I wanted to go into his office and talk about this more or if I had any questions. I said no and got out of the office as soon as possible. I had heard of cerebral palsy, but didn't really know anything about it at all. I started to get this lump in my throat, burning, and a feeling like someone was sitting on my chest on my way out of the building into the parking garage. I was carrying Nick, my baby, looking at him, and I couldn't speak when I tried to say something to him as he looked at me. Nothing could come out. I was sweating and could not breathe. I passed several people in the building and in the garage. People were talking, laughing, one smiled at me. I remember thinking, "this is what it feels like in the twilight zone" because I couldn't believe everyone was going on with their business as usual and I had my baby in my arms and he has cerebral palsy, brain damage, and I didn't know what that meant, but I knew it wasn't good. I was so angry and I felt like screaming but I didn't want to scare Nick or cause a scene. I didn't even realize it but huge tears were streaming down my face and my face was hot. I only realized it when I had trouble seeing. I got us in the car and drove home. My mom was home from work that day to wrap Christmas presents, etc. She had asked if I needed her to go to the appointment with me but I had told her no because it was just a follow up, I wasn't expecting anything new. She looked at me and knew something was wrong. I handed Nick to her and just said, "he has cerebral palsy" and left the room. I could hear here saying "no" and crying as I went upstairs. My Mom called Greg and told him and he came home. She called my friends and our family, the church and told them the news. I called our EIS and asked for info. on CP. That night, the doctor called and spoke to Greg. He knew I wasn't registering what he said and he was unsettled by my reaction. We set up an appointment to go into his office and talk to him to get more information and we did. The next month, we got a letter from our insurance company stating they would no longer pay for Nick's therapy (OT/PT?speech) because he was "non-restorable", a direct quote, because of his diagnosis and that is was a "chronic condition" that could not be cured". We spent the next two years, fighting our insurance company, hours on the phone, writing letters, appeals, up to the State Board of Insurance. When Nick was two years old, they finally agreed to pay for a certain number of visits.
What did we do during that time? Most people who know about CP know that even though it can't be "cured", it is "managed" and through therapy, especially during the early years, development can be maximized in every area. Some studies even say that brain cells can be repaired during that time. The bottom line is, if there is no early intervention, the outcome will be as good. So, we turned to our early intervention program for help. They had already been involved, but we showed them the letters from insurance so they provided those services for us. During this time too, I had to go back to work, because we NEEDED the insurance badly. After going to 17, yes I said 17, daycare centers and childcare providers, I finally found one center that said, sure come in, we'd like to try to make this work. So, even though it was agonizing for me as a mother of a baby with all of these issues, to go to work, we had to try to make this work. We met with the early intervention program, the EIS, the therapist, and the daycare staff. We had meetings at 7:30 am because they were trying to accommodate my work schedule and have everyone at the meetings who needed to be there. My family usually came too. We had Nick's IFSP (Individual Family Service Plan) meetings there every three months, but communicated daily or weekly. The early intervention staff provided support, information, and guidance to the daycare center to make things work for Nick and have him included as much as possible. He was. They learned how to care for him, feed him, give him his meds, position him. The EI staff provided a special corner chair that they had graduate students make for Nick so he could sit up and hold his head up to eat and for all activities. They provided other equipment as well. They OT from the EI program (who is still Nick's OT today, as she opened a therapy program with a colleague) made Nick's first pair of AFOs )Ankle Foot Orthotics with a grad student and with orders from Nick's orthopedic surgeon. When problems or issues came up, and they did, they helped to solve them with us and the center. The EIS visited Nick at the daycare once a week to work with him and the OT came with her at least twice a month. They had someone video-tape the sessions so Greg and I (and our family) could see them and know what they were doing if I couldn't make it there on my lunch hour. They helped us to make this work for our family. I get chills when I think about how much they did for Nick and us.
I read every book I could get my hands on and I (and Greg) educated ourselves about cerebral palsy and what Nick needed. This is when we started becoming "experts" on Nick and Nick's particular needs. CP has a wide-range of functioning levels, so it is different for everyone. We were told by three different doctors during this time that Nick would never walk and would have mental retardation. We thought, "ok, if that is the case, it is, but how do you know for sure?" We decided to let Nick show us what he could do. We made sure he got all of the therapy and equipment he needed. We did everything we could do. He started to do things, like hold his head up, learn to sit up by himself, stand in a standing device. True it was later than most kids, but we knew he was determined. We also knew he was trying to talk and tell us more things. He could point to the alphabet correctly, randomly, not in order, and consistently before he spoke. One professional said to us, "is this overly=hopeful parents speaking or can he really do this?" We thought, Nick, you show them and us what you can do. He did. We knew, even before they could "test" him that he did not have cognitive delays based on what he communicated to us, verbally and non-verbally. We consistently saw that Nick was SO FRUSTRATED because he wanted to say something or do something physically and his body was just not cooperating. It was heart-breaking to watch but also made us more determined than ever to advocate for Nick in any way possible.
I'll write more later, but this idea of advocating, had been a regular part of our lives ever since those early days. It comes from Nick and watching him "SHOW" us what he can do, what he wants to do, and we want to make sure he has the opportunities in life to do the things he wants to do. Not only that, we want him to have MEANINGFUL relationships and experiences. We want that for Nick and Bella both. We are no different than other parents who want the world for their kids!
Finally, going back to that time when I was sitting in the rocking chair and I just knew something was not right, I have often looked back and thought "what if I didn't listen to the nurses and just took him to the hospital sooner, or what if I had a medical background and would have known there was a problem, what if..........". I try not to do that anymore. They lesson we learned the VERY hard way is always listen to your intuition, and definitley when it comes to your children. You can never go back and change things. I don't know if I could have changed this, but you can never go back. I ALWAYS listen to my intuition now, even if the doctor or someone else thinks I'm over-reacting, I don't care. If I don't like a doctor or professional working with my children, I won't hesitate to make a change. I don't want others to learn this lesson the hard way, so maybe by sharing our story, someone will learn to trust their intuition! It's always better to be safe and even if it is "over-reacting", it's better than paying the price if you don't listen to your intuition and something bad happens. Trust me on this one.
Thursday, July 23, 2009
Where to begin........
I spent this past week thinking about where to begin with my blog and decided I was "over-thinking it" and that I just needed to begin!
This past week (summer really) has been busy but fun. Nick is volunteering as a camp counselor at The Ability Center for Camp Cricket, which is a day camp for kids with and without disabilities. Nick has been attending as a camper for the past 8 years, with the exception of the summer of 2002 we spent in Canada for Nick's therapy and last summer when Nick had extensive surgery. This year, we decided (he decided) to attend a week long golf camp for teens with disabilities through ACT. ACT has golf carts at a golf course near our home which are adapted for individuals who use wheelchairs / have physical challenges. They have chairs that swing out so you can golf from the chair and hand controls. Nick loved that and loved driving the golf carts independently. (watch out!) If you think about it, golf, for someone with cerebral palsy and gross and fine motor limitations like Nick, is GREAT physical therapy and very difficult. Nick said it is not easy, but it is fun and he loves it. He said is perfecting the "one hand CP (cerebral palsy) swing". He was actually sore one night after golfing. How cool, something fun and good for him at once. Then Nick is volunteering for four weeks (basically the month of July) at ACT/ Camp Cricket as a counselor. He helps out at camp and sometimes helps out at the golf camp too, depending on the day. He loves it and loves hanging out with some of the counselors he has gotten close to over the years. PLUS, Isabella is a camper at Camp Cricket this week and next week! She started attending when she was 6 years old. She loves it! For her, it is a lot of fun and her counselors say she is very "helpful" with the kids who have various disabilities at times. I don't think Isabella even thinks about that, she is loving the activities every day and she thinks it is pretty cool that Nick is there too as a counselor. Isabella also had fun attending a camp at the Humane Society in June with her friend Katie. She and Katie love animals! Next, during the first week of August, Nick is attending an overnight camp with other teens with disabilities (and there will be kids without disabilities at the camp too) with ACT staff to assist Nick with daily care/physical needs in Michigan. This will be the FIRST time Nick has gone to an overnight camp (or any other overnight) with the exception of 6th grade camp during which Greg took vacation time to attend that camp to assist Nick physically. So, it is the first time without one of us. (and he spends the night at family and friends houses on occasion!) To be honest, a friends suggested we send Nick to this camp previously, which I attended for several summers as a kid with my sister and friend. Greg and I were not comfortable with it because we didn't know if they had campers with disabilities and if they would have the assistance that Nick would need physically (to bathe, brush his teeth, dress, go to the restroom, get from place to place, carry things, eat, etc.) Our friends teased us and said we were "babying" Nick. We agree that we probably do at times. We do. The other issue for us was not being sure that Nick would have the assistance he needs and so therefore, his safety. Honestly, Greg's friend accidentally died at this camp in the 1980s when he was working there and a tractor fell over on him. So, all of those factors came into play for us as parents. Now, however, The Ability Center is providing staff to go with Nick for physical assistance, so we decided to go for it! I'd be lying if I said we aren't worried, but we REALLY do want Nick to have the same experiences other kids have and want him to have a great time. So, with a little planning and help from ACT, we are hoping Nick has a great time. Summer 2009 is a busy but fun time for us so far!
Tonight, after camp, Greg took Nick and Bella to the YMCA to swim / for Nick's water therapy (physical therapy in the water!). Nick has said the only time he is not in physical pain is when he is in the water. We try to get him to the Y as much as we can (with our schedules, work, etc.) and we try to continue the exercises we learned for Nick during his rehab last year after his surgery. Our local Y has a pool AND a therapy pool, and we've used both, depending on the availability of the therapy pool. Nick is pretty much in constant pain now. We spoke to his orthopedic surgeon last month. Dr. Munk has been seeing Nick since he was 6 months old for all of his orthopedic issues related to the CP. Dr. Munk said, with Nick's muscle tone and involuntary movements, Nick has to work "three times as hard" as we do to physically do the things that we do all of the time. (get out of bed, hold his head up, sit up straight, ETC.) He said that it is normal, or expected, that with all of this, Nick would feel as if he just ran a marathon, pretty much all of the time. Nick has said this was a good way to explain it. He is always in pain when he is awake, except when he is in warmer water. I knew that, as his mother. I mean, I knew he was in pain all of the time and we've done things to manage it. We don't like him taking meds all of the time, at least ones that interfere with his functioning. (make him too tired during school or the day in general, etc.) For some reason, though, I thought it would "get better" (the pain) so it was hard to hear that news from Dr. Munk. Nick wasn't surprised at all. I was for some reason. We are now more motivated than ever to try to get Nick to the Y as much as possible. We can't afford a pool or therapy pool, so this is our best option. In fact, they just returned from the Y and Nick said he feels "good"! It's all about "managing" the pain and issues related to the CP. That is one thing we've learned over the years. It's not going to go away. There is "no cure" and it doesn't get better. Over time, in fact, some things for Nick have improved, and then different physical complications come up. Nick has an overall GREAT attitude about it all. We kind of approach it as a team effort too. We all know how to help Nick with his stretches, etc. and we try to do as many things as we can as a family, even therapy at times! For us, that is just what families are all about and we wouldn't do it any other way.
I plan to write more later about our summer and also to start writing some of our stories from Nick's early years! One final thing fot now.........a couple of people asked me why I chose to title this blog "CP Family". The answer is simple. I tried to come up with a "creative" name and couldn't. Also, I wanted people searching for info. about having a family member with CP, connecting with others who have a family member with CP, etc., to be able to find the blog. So, I kept it simple. That's it! Thanks for asking and for the input!
This past week (summer really) has been busy but fun. Nick is volunteering as a camp counselor at The Ability Center for Camp Cricket, which is a day camp for kids with and without disabilities. Nick has been attending as a camper for the past 8 years, with the exception of the summer of 2002 we spent in Canada for Nick's therapy and last summer when Nick had extensive surgery. This year, we decided (he decided) to attend a week long golf camp for teens with disabilities through ACT. ACT has golf carts at a golf course near our home which are adapted for individuals who use wheelchairs / have physical challenges. They have chairs that swing out so you can golf from the chair and hand controls. Nick loved that and loved driving the golf carts independently. (watch out!) If you think about it, golf, for someone with cerebral palsy and gross and fine motor limitations like Nick, is GREAT physical therapy and very difficult. Nick said it is not easy, but it is fun and he loves it. He said is perfecting the "one hand CP (cerebral palsy) swing". He was actually sore one night after golfing. How cool, something fun and good for him at once. Then Nick is volunteering for four weeks (basically the month of July) at ACT/ Camp Cricket as a counselor. He helps out at camp and sometimes helps out at the golf camp too, depending on the day. He loves it and loves hanging out with some of the counselors he has gotten close to over the years. PLUS, Isabella is a camper at Camp Cricket this week and next week! She started attending when she was 6 years old. She loves it! For her, it is a lot of fun and her counselors say she is very "helpful" with the kids who have various disabilities at times. I don't think Isabella even thinks about that, she is loving the activities every day and she thinks it is pretty cool that Nick is there too as a counselor. Isabella also had fun attending a camp at the Humane Society in June with her friend Katie. She and Katie love animals! Next, during the first week of August, Nick is attending an overnight camp with other teens with disabilities (and there will be kids without disabilities at the camp too) with ACT staff to assist Nick with daily care/physical needs in Michigan. This will be the FIRST time Nick has gone to an overnight camp (or any other overnight) with the exception of 6th grade camp during which Greg took vacation time to attend that camp to assist Nick physically. So, it is the first time without one of us. (and he spends the night at family and friends houses on occasion!) To be honest, a friends suggested we send Nick to this camp previously, which I attended for several summers as a kid with my sister and friend. Greg and I were not comfortable with it because we didn't know if they had campers with disabilities and if they would have the assistance that Nick would need physically (to bathe, brush his teeth, dress, go to the restroom, get from place to place, carry things, eat, etc.) Our friends teased us and said we were "babying" Nick. We agree that we probably do at times. We do. The other issue for us was not being sure that Nick would have the assistance he needs and so therefore, his safety. Honestly, Greg's friend accidentally died at this camp in the 1980s when he was working there and a tractor fell over on him. So, all of those factors came into play for us as parents. Now, however, The Ability Center is providing staff to go with Nick for physical assistance, so we decided to go for it! I'd be lying if I said we aren't worried, but we REALLY do want Nick to have the same experiences other kids have and want him to have a great time. So, with a little planning and help from ACT, we are hoping Nick has a great time. Summer 2009 is a busy but fun time for us so far!
Tonight, after camp, Greg took Nick and Bella to the YMCA to swim / for Nick's water therapy (physical therapy in the water!). Nick has said the only time he is not in physical pain is when he is in the water. We try to get him to the Y as much as we can (with our schedules, work, etc.) and we try to continue the exercises we learned for Nick during his rehab last year after his surgery. Our local Y has a pool AND a therapy pool, and we've used both, depending on the availability of the therapy pool. Nick is pretty much in constant pain now. We spoke to his orthopedic surgeon last month. Dr. Munk has been seeing Nick since he was 6 months old for all of his orthopedic issues related to the CP. Dr. Munk said, with Nick's muscle tone and involuntary movements, Nick has to work "three times as hard" as we do to physically do the things that we do all of the time. (get out of bed, hold his head up, sit up straight, ETC.) He said that it is normal, or expected, that with all of this, Nick would feel as if he just ran a marathon, pretty much all of the time. Nick has said this was a good way to explain it. He is always in pain when he is awake, except when he is in warmer water. I knew that, as his mother. I mean, I knew he was in pain all of the time and we've done things to manage it. We don't like him taking meds all of the time, at least ones that interfere with his functioning. (make him too tired during school or the day in general, etc.) For some reason, though, I thought it would "get better" (the pain) so it was hard to hear that news from Dr. Munk. Nick wasn't surprised at all. I was for some reason. We are now more motivated than ever to try to get Nick to the Y as much as possible. We can't afford a pool or therapy pool, so this is our best option. In fact, they just returned from the Y and Nick said he feels "good"! It's all about "managing" the pain and issues related to the CP. That is one thing we've learned over the years. It's not going to go away. There is "no cure" and it doesn't get better. Over time, in fact, some things for Nick have improved, and then different physical complications come up. Nick has an overall GREAT attitude about it all. We kind of approach it as a team effort too. We all know how to help Nick with his stretches, etc. and we try to do as many things as we can as a family, even therapy at times! For us, that is just what families are all about and we wouldn't do it any other way.
I plan to write more later about our summer and also to start writing some of our stories from Nick's early years! One final thing fot now.........a couple of people asked me why I chose to title this blog "CP Family". The answer is simple. I tried to come up with a "creative" name and couldn't. Also, I wanted people searching for info. about having a family member with CP, connecting with others who have a family member with CP, etc., to be able to find the blog. So, I kept it simple. That's it! Thanks for asking and for the input!
Wednesday, July 15, 2009
A little about our family
We are The Hyndman Family. It all started when Greg and I, high school sweethearts, got married. Greg and I just celebrated our 19th wedding anniversary on June 30, 2009. We've been a couple for 27 years!
Greg works as a Caster Team Leader at a local steel mill and is in school completing his bachelors degree. I, Amy, have a Bachelors Degree in Social Work and a Masters Degree in Education/Special Education and have worked with individuals with disabilities in some capacity for 19 years.
We were SO excited when Nicholas Austin Hyndman (now prefers "Nick") was born on August 18, 1993! Then on September 20, 1999, we were just as excited when Isabella Grace Hyndman (she now goes by "Bella" most of the time!) joined our family. We now have three dogs as well, Oreo, our 9-year old Boston Terrier, Ozzie, our 4-year old Pom mix, and most recently, we welcomed Charger, Nick's service dogs from Assistance Dogs of America (www.adai.org) in April 2009. Charger is a 2 year-old lab/golden retriever mix.
When Nick was about 6 days old, he suffered brain damage due to a medical problem, and on December 7, 1993, he was diagnosed with athetoid cerebral palsy. WOW, it's been a journey since then. Greg and I were young, read all of the books about parenting, did everything the doctors told us to do, and NEVER dreamed of anything going wrong. We were SO unprepared, although I don't know if anyone could be prepared. The roller coaster of emotions has been constant for the past 15 years, and it's been a whirlwind 0f hospitalizations, illnesses, doctors, specialists, therapists (physical, occupational, and speech therapy), meetings, school issues, durable medical equipment, surgery, social issues, and more. Someone once told me, it's like "parenthood magnified" because you have all of the issues of parenting a child, plus the layers of "disability" stuff. I agree with that description. I don't want to sound like it is all bad though. Having Nick and Bella has been the most rewarding and best thing we've ever done (besides meeting and getting married!). We are a happy family!
Anyhow, more about Nick.........at 8 years of age, Nick was diagnosed with a bilateral (both ears) progressive (mild-moderate) hearing loss. Another whole disability we never expected. That hit us seemingly out of the blue. Nick also has very severe GI reflux and gets sick pretty easily.
The cerebral palsy affects all four of Nick's limbs and his speech, characterized as "quadriplegia". Cerebral Palsy (or CP), for those of you who don't know, is a chronic condition (caused by damage to the brain) that affects muscle control and coordination. We've found a great deal of good information about cerebral palsy on the United Cerebral Palsy (UCP) web site, www.ucp.org. In Nick's case, the basil ganglia area of the brain is damaged. Nick's CP affects all parts of his body and he has "low tone" CP and involuntary movements. In Nick's case, there is NO cognitive impairment, so his CP affects his physically only. Nick uses a walker and wheelchair to get around, although he's worked VERY hard over the years to walk and can walk, although it is unsteady and he can fall a lot. He also uses a Segway ( a scooter) instead of a power chair (www.segway.com) so he can be at people's eye level and we had a seat made for it. He uses the Segway at school. Nick has always worn, and still wears, leg braces (AFO, or Ankle Foot Orthotics). Nick's fine motor skills (handwriting, being able to button clothing, etc.) are affected as well. Nick's speech is also affected. We can understand Nick, and so can most people who know him, but his speech can be quiet and people really have to just SLOW down and listen to hear and understand him. As you can imagine, this can be a problem with other kids at school. Nick also wears hearing aids. (on his third pair! UGH! That is a whole other story for another time!) Nick is in regular education classes and will be in 11th grade at high school. He is a great student and made the honor roll during his entire 10th grade year. He needs a para-professional (para) for assistance with taking notes and other physical needs and Nick needs and uses the computer to write in order to keep up with the pace of his regular education classes. (Technology is VERY important, again, more on that one later!) Nick just passed the Ohio Graduation Test (OGTs) this past year, 10th grade, in the highest categories in every subject, so he was THRILLED to have that out of the way, and to not have to take his final exams this year! It was very cool! Nick loves sports, music, the computer, his cell phone (texting has been so wonderful for Nick and has allowed him to communicate easily with others and not have to worry about them understanding him!), video games, and more. Just like most kids his age. He plays challenger baseball and would love to play competitive sports. College and driving (yes, driving.....we had an evaluation and Nick can drive with a minor modification on the steering wheel!) are around the corner and it is all coming so fast! We are dreading it and celebrating it at the same time if that makes sense. This is what we want for Nick, for him to have all of the opportunities that other kids his age have and to be out there in the world like everyone else! At the same time, we worry like a lot of parents do, but are loving it too. Go Nick! One more thing..........Nick received his service dog, Charger, in April of this year, just three months ago from ADAI. He is working hard to bond with Charger (they have an intense bond!) and work on Charger's commands. Charger can retrieve items for Nick, get him a snack out of the fridge, open doors, pick things up, take off Nick's socks, pull up his covers, get Nick the phone and/or his cell phone, help steady Nick when he walks, and more. Then they get to hang out together and keep each other company. This has been great for Nick because one of the hardest issues he deals with now is social issues, or the lack of friends and peers his age to REALLY hang out with and do things with. Most kids either ignore him (and stare) or they are "nice" to him, might smile or say hello in the hallway at school, but they don' t really talk to him, get to know him, hang out with him, etc. It's getting a little better in high school, but we're not totally there yet. Texting, Face book, e-mail has also helped Nick, but we, like other parents, monitor that. We hope it will continue to get better. This summer, Nick has attended golf camp and is volunteering as a camp counselor for Camp Cricket at The Ability Center of Greater Toledo (ACT), www.abilitycenter.org, and is loving it! More on ACT later too.
Isabella, or Bella, is 9 and going into 4th grade. She is a SWEET little girl and loves animals, reading, dance (takes tap, jazz, and ballet), and she is a natural caregiver. Bella is so empathetic towards other, including people with disabilities in our circles and at school, and she and Nick are VERY close, even though there are six years between them in age. Bella has really witnessed Nick's struggles and triumphs and we've ALWAYS spoken to her honestly, at the level she could understand at the time, about Nick's disability (and other disabilities). We've collected many books for children on disabilities and have read them to her and talked to her about her feelings good and bad about having a sibling with a disability. Bella has spoken to her class at school about Nick's disability and read them books about CP. She also spoke to a college class (graduate special ed students) when she was 8, in a "sibling panel" about her experiences having a brother with CP and did GREAT!
As a family, we are close, and spend all of the time we can doing things together. We all have our individual interests like all people, but our focus is really on our family as a unit too. We are really a "team". Many of the events in our life have revolved around Nick's disability at times (therapies, surgeries, assistance dog trainings, Make-A-Wish foundation trip, ETC.), good things and not so great things. We feel that is just what families do and we wouldn't do it any differently given another option. So, sometimes, the times that have been challenging, like when we went to Canada (Ability Camp) for 6 weeks for Nick to receive intensive therapy in 2002, it was hard, but it was also one of the BEST times of our life! (The time we spent together during those 6 weeks, we often look back on fondly and we had so much fun on those weekends off in a beautiful place!) Because of Nick's disability, we've met some of our greatest and best friends and had experiences that we would not trade for anything. We've met some great people along the way. We've also learned some of the most valuable life lessons about what is REALLY important, health and family.
Well, this post is much longer than I planned but I wanted to give you an idea of who we are and I'll be writing more along the way. Thanks for reading!
Amy
Greg works as a Caster Team Leader at a local steel mill and is in school completing his bachelors degree. I, Amy, have a Bachelors Degree in Social Work and a Masters Degree in Education/Special Education and have worked with individuals with disabilities in some capacity for 19 years.
We were SO excited when Nicholas Austin Hyndman (now prefers "Nick") was born on August 18, 1993! Then on September 20, 1999, we were just as excited when Isabella Grace Hyndman (she now goes by "Bella" most of the time!) joined our family. We now have three dogs as well, Oreo, our 9-year old Boston Terrier, Ozzie, our 4-year old Pom mix, and most recently, we welcomed Charger, Nick's service dogs from Assistance Dogs of America (www.adai.org) in April 2009. Charger is a 2 year-old lab/golden retriever mix.
When Nick was about 6 days old, he suffered brain damage due to a medical problem, and on December 7, 1993, he was diagnosed with athetoid cerebral palsy. WOW, it's been a journey since then. Greg and I were young, read all of the books about parenting, did everything the doctors told us to do, and NEVER dreamed of anything going wrong. We were SO unprepared, although I don't know if anyone could be prepared. The roller coaster of emotions has been constant for the past 15 years, and it's been a whirlwind 0f hospitalizations, illnesses, doctors, specialists, therapists (physical, occupational, and speech therapy), meetings, school issues, durable medical equipment, surgery, social issues, and more. Someone once told me, it's like "parenthood magnified" because you have all of the issues of parenting a child, plus the layers of "disability" stuff. I agree with that description. I don't want to sound like it is all bad though. Having Nick and Bella has been the most rewarding and best thing we've ever done (besides meeting and getting married!). We are a happy family!
Anyhow, more about Nick.........at 8 years of age, Nick was diagnosed with a bilateral (both ears) progressive (mild-moderate) hearing loss. Another whole disability we never expected. That hit us seemingly out of the blue. Nick also has very severe GI reflux and gets sick pretty easily.
The cerebral palsy affects all four of Nick's limbs and his speech, characterized as "quadriplegia". Cerebral Palsy (or CP), for those of you who don't know, is a chronic condition (caused by damage to the brain) that affects muscle control and coordination. We've found a great deal of good information about cerebral palsy on the United Cerebral Palsy (UCP) web site, www.ucp.org. In Nick's case, the basil ganglia area of the brain is damaged. Nick's CP affects all parts of his body and he has "low tone" CP and involuntary movements. In Nick's case, there is NO cognitive impairment, so his CP affects his physically only. Nick uses a walker and wheelchair to get around, although he's worked VERY hard over the years to walk and can walk, although it is unsteady and he can fall a lot. He also uses a Segway ( a scooter) instead of a power chair (www.segway.com) so he can be at people's eye level and we had a seat made for it. He uses the Segway at school. Nick has always worn, and still wears, leg braces (AFO, or Ankle Foot Orthotics). Nick's fine motor skills (handwriting, being able to button clothing, etc.) are affected as well. Nick's speech is also affected. We can understand Nick, and so can most people who know him, but his speech can be quiet and people really have to just SLOW down and listen to hear and understand him. As you can imagine, this can be a problem with other kids at school. Nick also wears hearing aids. (on his third pair! UGH! That is a whole other story for another time!) Nick is in regular education classes and will be in 11th grade at high school. He is a great student and made the honor roll during his entire 10th grade year. He needs a para-professional (para) for assistance with taking notes and other physical needs and Nick needs and uses the computer to write in order to keep up with the pace of his regular education classes. (Technology is VERY important, again, more on that one later!) Nick just passed the Ohio Graduation Test (OGTs) this past year, 10th grade, in the highest categories in every subject, so he was THRILLED to have that out of the way, and to not have to take his final exams this year! It was very cool! Nick loves sports, music, the computer, his cell phone (texting has been so wonderful for Nick and has allowed him to communicate easily with others and not have to worry about them understanding him!), video games, and more. Just like most kids his age. He plays challenger baseball and would love to play competitive sports. College and driving (yes, driving.....we had an evaluation and Nick can drive with a minor modification on the steering wheel!) are around the corner and it is all coming so fast! We are dreading it and celebrating it at the same time if that makes sense. This is what we want for Nick, for him to have all of the opportunities that other kids his age have and to be out there in the world like everyone else! At the same time, we worry like a lot of parents do, but are loving it too. Go Nick! One more thing..........Nick received his service dog, Charger, in April of this year, just three months ago from ADAI. He is working hard to bond with Charger (they have an intense bond!) and work on Charger's commands. Charger can retrieve items for Nick, get him a snack out of the fridge, open doors, pick things up, take off Nick's socks, pull up his covers, get Nick the phone and/or his cell phone, help steady Nick when he walks, and more. Then they get to hang out together and keep each other company. This has been great for Nick because one of the hardest issues he deals with now is social issues, or the lack of friends and peers his age to REALLY hang out with and do things with. Most kids either ignore him (and stare) or they are "nice" to him, might smile or say hello in the hallway at school, but they don' t really talk to him, get to know him, hang out with him, etc. It's getting a little better in high school, but we're not totally there yet. Texting, Face book, e-mail has also helped Nick, but we, like other parents, monitor that. We hope it will continue to get better. This summer, Nick has attended golf camp and is volunteering as a camp counselor for Camp Cricket at The Ability Center of Greater Toledo (ACT), www.abilitycenter.org, and is loving it! More on ACT later too.
Isabella, or Bella, is 9 and going into 4th grade. She is a SWEET little girl and loves animals, reading, dance (takes tap, jazz, and ballet), and she is a natural caregiver. Bella is so empathetic towards other, including people with disabilities in our circles and at school, and she and Nick are VERY close, even though there are six years between them in age. Bella has really witnessed Nick's struggles and triumphs and we've ALWAYS spoken to her honestly, at the level she could understand at the time, about Nick's disability (and other disabilities). We've collected many books for children on disabilities and have read them to her and talked to her about her feelings good and bad about having a sibling with a disability. Bella has spoken to her class at school about Nick's disability and read them books about CP. She also spoke to a college class (graduate special ed students) when she was 8, in a "sibling panel" about her experiences having a brother with CP and did GREAT!
As a family, we are close, and spend all of the time we can doing things together. We all have our individual interests like all people, but our focus is really on our family as a unit too. We are really a "team". Many of the events in our life have revolved around Nick's disability at times (therapies, surgeries, assistance dog trainings, Make-A-Wish foundation trip, ETC.), good things and not so great things. We feel that is just what families do and we wouldn't do it any differently given another option. So, sometimes, the times that have been challenging, like when we went to Canada (Ability Camp) for 6 weeks for Nick to receive intensive therapy in 2002, it was hard, but it was also one of the BEST times of our life! (The time we spent together during those 6 weeks, we often look back on fondly and we had so much fun on those weekends off in a beautiful place!) Because of Nick's disability, we've met some of our greatest and best friends and had experiences that we would not trade for anything. We've met some great people along the way. We've also learned some of the most valuable life lessons about what is REALLY important, health and family.
Well, this post is much longer than I planned but I wanted to give you an idea of who we are and I'll be writing more along the way. Thanks for reading!
Amy
Welcome to our Blog!
Hello and welcome to our new blog, Cerebral Palsy Family!
We are The Hyndman Family, Greg, Amy, Nick, and Isabella. We live in Ohio. Our son, Nick, has cerebral palsy and progressive hearing loss. We'll write more about all of us later.
We are not "experts" on cerebral palsy. I, Amy, and my husband Greg, are the parents of 15 year-old Nicholas (he prefers "Nick") and 9 year-old Isabella. Nick has cerebral palsy (CP) and progressive hearing loss.
We wanted to create this blog to share our story and experiences living with Nick's disability, share some information and resources we've learned about along the way, and to talk to other families and individuals living with cerebral palsy or who have a family member or friend with cerebral palsy. This blog is a "work in progress" and we hope (a lot of "HOPE") this will be a great experience for us and for others. This is my first blog, so I'm sure it will get better as I go and learn more.
I would love to hear from others. I want this to be a POSITIVE experience of sharing. So, here we go! More to come!!!!!!!!!!!!!!!!
We are The Hyndman Family, Greg, Amy, Nick, and Isabella. We live in Ohio. Our son, Nick, has cerebral palsy and progressive hearing loss. We'll write more about all of us later.
We are not "experts" on cerebral palsy. I, Amy, and my husband Greg, are the parents of 15 year-old Nicholas (he prefers "Nick") and 9 year-old Isabella. Nick has cerebral palsy (CP) and progressive hearing loss.
We wanted to create this blog to share our story and experiences living with Nick's disability, share some information and resources we've learned about along the way, and to talk to other families and individuals living with cerebral palsy or who have a family member or friend with cerebral palsy. This blog is a "work in progress" and we hope (a lot of "HOPE") this will be a great experience for us and for others. This is my first blog, so I'm sure it will get better as I go and learn more.
I would love to hear from others. I want this to be a POSITIVE experience of sharing. So, here we go! More to come!!!!!!!!!!!!!!!!
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