I have met many parents over the years who refuse to talk to others about their lives with their children who have autism. I know there are people who think I share too much regarding the life we have with Jonathon. The reason I do share our lives is for Jonathon. I don't think remaining silent, hiding the truths of living in our world do Jonathon any good.
It is my responsibility to educate the people in Jonathon's world about autism, his struggles, his achievements, his life. By not sharing him with others, I feel, it implies shame, embarrassment, that we are not accepting of our lives with him and who he is as a person. There is nothing to be ashamed of for who he is, which is my son who happens to have autism. We have definitely had embarrassing moments, but who doesn't have embarrassing moments with any child, whether they have autism or not. I consider myself very blessed to be Jonathon's Mom.
Jonathon doesn't understand this world, but he has to live in this world. If, by speaking up and sharing the events that occur in our lives with him, I can make the world a more accepting place for him to live in then I am going to do it. My intentions are never to take away his dignity, but to educate others.
Tuesday, November 29, 2011
Sunday, November 20, 2011
Daddy Tim
Today is Daddy Tim's birthday so in honor of him my post is about him.
Early in our relationship I knew Tim wanted to be a Dad more than anything. The births of our children Lindsey and Jonathon were definite highlights in his life.
He was so proud of Lindsey and like many new Dads wanted to show her off to his Navy buddies. The problem was the hospital would only allow family in to see the baby. So what does Tim do when he brought two of his buddies to the hospital to show off his little girl... he told the nursing staff "we're not sure who the Dad is so we're all here to take a look!" OMG! Could've killed him! LOL! Obviously the hospital thought he was pretty funny too since they let them all in... or they thought I was a tramp! At her birth and for weeks after, Tim would look at me with tearful eyes and tell me "Thank you. Thank you so much."
When Jonathon was born he was a BIG baby... Jonathon, not Tim... well Tim was pretty tearful! The hospital asked if an intern doc could be in the room while I delivered... when a woman is about to give birth she really doesn't care if a marching band comes through, so I said "sure." The minute Jonathon came into the world Tim cried... a lot! So much so that the intern asked me if Tim was ok! I said "yes, he did this at our daughter's birth as well. He's fine!" Tim was so excited to see how much Jonathon would weigh. He couldn't wait for the hospital to weigh him. In fact, he followed them up to the room where they weighed the babies. You'd have thought Tim had just caught the biggest fish of his life! He was so thrilled. Jonathon weighed in at 9lbs. 6oz. and was 23 inches long!
The other day I was commenting to Tim that I wished we'd have had more kids. Tim's response was... "I'm happy with the two we've got and I'm so proud of them."
Happy birthday Tim and thank you for being a Dad who has great love and joy for our kids!
Early in our relationship I knew Tim wanted to be a Dad more than anything. The births of our children Lindsey and Jonathon were definite highlights in his life.
He was so proud of Lindsey and like many new Dads wanted to show her off to his Navy buddies. The problem was the hospital would only allow family in to see the baby. So what does Tim do when he brought two of his buddies to the hospital to show off his little girl... he told the nursing staff "we're not sure who the Dad is so we're all here to take a look!" OMG! Could've killed him! LOL! Obviously the hospital thought he was pretty funny too since they let them all in... or they thought I was a tramp! At her birth and for weeks after, Tim would look at me with tearful eyes and tell me "Thank you. Thank you so much."
When Jonathon was born he was a BIG baby... Jonathon, not Tim... well Tim was pretty tearful! The hospital asked if an intern doc could be in the room while I delivered... when a woman is about to give birth she really doesn't care if a marching band comes through, so I said "sure." The minute Jonathon came into the world Tim cried... a lot! So much so that the intern asked me if Tim was ok! I said "yes, he did this at our daughter's birth as well. He's fine!" Tim was so excited to see how much Jonathon would weigh. He couldn't wait for the hospital to weigh him. In fact, he followed them up to the room where they weighed the babies. You'd have thought Tim had just caught the biggest fish of his life! He was so thrilled. Jonathon weighed in at 9lbs. 6oz. and was 23 inches long!
The other day I was commenting to Tim that I wished we'd have had more kids. Tim's response was... "I'm happy with the two we've got and I'm so proud of them."
Happy birthday Tim and thank you for being a Dad who has great love and joy for our kids!
Thursday, November 17, 2011
InFEARiate
The meaning of the word infuriate has taken on an entirely new meaning to me then what it used to. "Used to" meaning before Jonathon. Coming off six days of blow ups my inFEARiation is still fresh on my mind.
When Jonathon struggles, behaviorally, I try to maintain myself as his caregiver. Years ago, I learned to take myself out of the role as his Mom and step into the role of caregiver when he is having a melt down. Why? What's the difference in being a caregiver and a Mom? A caregiver is performing a job. The job is too get through the crisis while maintaining oneself. If I were to remain in the role of being Jonathon's Mom during a blow up... as his Mom... I wouldn't survive. It's too heartbreaking to think that the child I gave birth to, held, rocked... loved... would cause me harm.
I've noticed that in recent times I've found myself not maintaining my caregiver role as well as I used to. The difference being, that as Jonathon has aged, fear has set in. Fear that could give way to reality. Mentally he is a child; physically he is an adult. The world is going to see him as an adult before they see him as a child in an adult body. When he melts down and the aggression controls him, fear can sometimes control my actions. My reactions aren't out of anger, but out of fear. The fear that the authorities will become involved. The fear that he will be removed from our home, which would lead to my ultimate fear... institutionalization. During his meltdowns I just want him to understand the possible implications of his actions. I want to scream "DON'T YOU GET IT?! YOU COULD END UP IN AN INSTITUTION!" The thing is... he doesn't get it. Does that mean he will never understand the impact his actions have on his life? I hope not. I won't give up trying to help him... guide him to a place of understanding. My fear for his future is my greatest burden, but my hope for him is greater.
When Jonathon struggles, behaviorally, I try to maintain myself as his caregiver. Years ago, I learned to take myself out of the role as his Mom and step into the role of caregiver when he is having a melt down. Why? What's the difference in being a caregiver and a Mom? A caregiver is performing a job. The job is too get through the crisis while maintaining oneself. If I were to remain in the role of being Jonathon's Mom during a blow up... as his Mom... I wouldn't survive. It's too heartbreaking to think that the child I gave birth to, held, rocked... loved... would cause me harm.
I've noticed that in recent times I've found myself not maintaining my caregiver role as well as I used to. The difference being, that as Jonathon has aged, fear has set in. Fear that could give way to reality. Mentally he is a child; physically he is an adult. The world is going to see him as an adult before they see him as a child in an adult body. When he melts down and the aggression controls him, fear can sometimes control my actions. My reactions aren't out of anger, but out of fear. The fear that the authorities will become involved. The fear that he will be removed from our home, which would lead to my ultimate fear... institutionalization. During his meltdowns I just want him to understand the possible implications of his actions. I want to scream "DON'T YOU GET IT?! YOU COULD END UP IN AN INSTITUTION!" The thing is... he doesn't get it. Does that mean he will never understand the impact his actions have on his life? I hope not. I won't give up trying to help him... guide him to a place of understanding. My fear for his future is my greatest burden, but my hope for him is greater.
Sunday, November 13, 2011
Project Lifesaver
Sometimes it is necessary to lie in order to protect someone. After six days of continual blow ups and Jonathon leaving the house without us we decided we needed to contact our local Sheriff's office for a tracking bracelet for Jonathon. It is a white watch looking device that has a GPS inside. If Jonathon takes off and we can't find him we call the Sheriff's office, tell them we need them to activate the bracelet because he is gone and they will track him down. It is basically the same type of device used to track animals in the wild.
We weren't sure how we would be able to get him to keep the bracelet on especially if he knew it was a way for the authorities to find him when he's upset and has taken off. Visiting with the Sheriff's Deputy, she mentioned an elderly man who wouldn't keep his bracelet on so they told him it was to monitor his heart. PERFECT since Jonathon has been obsessing about all of our hearts due to the recent deaths in our family. Jonathon is now sporting a tracking (heart) bracelet from Project Lifesaver.
If anyone has a family member who is prone to "exploring" when they shouldn't... people with Alzheimer's, Autism, Down Syndrome, etc... contact your local Sheriff's office and ask them if they have Project Lifesaver. There is a nominal monthly fee (ours is $10 a month, but it can differ). I know in places that are more populated there may be higher fees, but ask if there are any kind of scholarships/funding available to cover the cost.
It is definitely worth looking into if you have a family member who's safety is a concern!
We weren't sure how we would be able to get him to keep the bracelet on especially if he knew it was a way for the authorities to find him when he's upset and has taken off. Visiting with the Sheriff's Deputy, she mentioned an elderly man who wouldn't keep his bracelet on so they told him it was to monitor his heart. PERFECT since Jonathon has been obsessing about all of our hearts due to the recent deaths in our family. Jonathon is now sporting a tracking (heart) bracelet from Project Lifesaver.
If anyone has a family member who is prone to "exploring" when they shouldn't... people with Alzheimer's, Autism, Down Syndrome, etc... contact your local Sheriff's office and ask them if they have Project Lifesaver. There is a nominal monthly fee (ours is $10 a month, but it can differ). I know in places that are more populated there may be higher fees, but ask if there are any kind of scholarships/funding available to cover the cost.
It is definitely worth looking into if you have a family member who's safety is a concern!
Wednesday, November 9, 2011
SNAPPED
Jonathon woke up in another mood today. I always know it's going to be a challenging day when he dresses before coming upstairs. He didn't disappoint! I headed off the "mood" with his "as needed medication" - it's only used when his anxiety and agitation are escalating or escalated. The meds helped him pull it together, so I decided I would take him to the grocery store to get his favorite lunch, chicken strips.
The grocery store only makes certain food items on certain days. Wednesday is chicken strip day. We have had melt downs over going to the store on different days of the week and it not being "chicken strip day." The poor women at the deli have been chewed out by Jonathon over the lack of chicken strips, so our relationship with the deli ladies is a bit strained.
We walked up to the deli counter... I looked in... and... NO CHICKEN STRIPS!
The melt down that followed... mine... not Jonathon's, can only be understood by a mother of a child with autism. I felt the blood drain from my face and my eyes pop out of my head as I snapped... "Isn't today Wednesday? Where are the chicken strips?!"
I could tell she was a little taken aback with my tone. In that moment what she saw was a woman who seemed like a rude, almost crazed person. What she didn't see is what brought me to that moment. Five days of blow ups. She didn't witness the melt downs, the physical assaults to his Dad and me, the damage he's done to our property, us chasing him down to keep him from damaging other's property, or us tracking him down in the middle of the night. It wasn't about the chicken strips... it was knowing that no chicken strips meant I would have yet another fire I'd have to put out with him... and at this point... I'm worn down... I'm tired.
Any other day I could have handled it, but today I just needed those stupid chicken strips to be in that deli case. Thankfully she assured me that today was, indeed, Wednesday and that they had run out and were cooking more.
THANK YOU GOD! It was practically a Christmas miracle! :)
The grocery store only makes certain food items on certain days. Wednesday is chicken strip day. We have had melt downs over going to the store on different days of the week and it not being "chicken strip day." The poor women at the deli have been chewed out by Jonathon over the lack of chicken strips, so our relationship with the deli ladies is a bit strained.
We walked up to the deli counter... I looked in... and... NO CHICKEN STRIPS!
The melt down that followed... mine... not Jonathon's, can only be understood by a mother of a child with autism. I felt the blood drain from my face and my eyes pop out of my head as I snapped... "Isn't today Wednesday? Where are the chicken strips?!"
I could tell she was a little taken aback with my tone. In that moment what she saw was a woman who seemed like a rude, almost crazed person. What she didn't see is what brought me to that moment. Five days of blow ups. She didn't witness the melt downs, the physical assaults to his Dad and me, the damage he's done to our property, us chasing him down to keep him from damaging other's property, or us tracking him down in the middle of the night. It wasn't about the chicken strips... it was knowing that no chicken strips meant I would have yet another fire I'd have to put out with him... and at this point... I'm worn down... I'm tired.
Any other day I could have handled it, but today I just needed those stupid chicken strips to be in that deli case. Thankfully she assured me that today was, indeed, Wednesday and that they had run out and were cooking more.
THANK YOU GOD! It was practically a Christmas miracle! :)
Saturday, November 5, 2011
Desperate Measures
The other day Jonathon woke up on the wrong side of the bed. I'm not sure what caused his mood. Usually he's easy going when he wakes up. As the day went on his agitation increased so my sister in law, niece, nephew and I decided to take him to the town park to throw rocks in the water... one of his favorite activities.
It was a cold day, a mere 14 degrees outside. Plus, the wind was blowing a bit so it was probably even colder with the wind chill. My sister in law and I sat in the vehicle while the kids went down to the water. After awhile my niece came to the vehicle and said Jonathon wanted us to come to the water, so we headed to the creek.
Jonathon rarely goes in the water so I was surprised to see his shoes and about 6" of his pant legs wet. When questioned about how he got wet he said he'd slipped on the mud and slid into the water. With it being so cold out I told him we needed to leave and go home so he could get out of his wet shoes and clothes. He was NOT happy with me. He wanted to stay and throw rocks and sticks in the water. After a few minutes of trying to convince him by telling him he could get frost bite, his feet could get sick, and him not cooperating... I got a little desperate... okay, I got a lot desperate! He wouldn't listen to reason as he was still in a bad mood, so I told him he had to get in the car or his feet would get sick and he'd end up a peg leg! I know... it's horrible! But I can't exactly pick up a 225 pound 6'2" man and put him in the car! It did work. He got in the car, we got home and he got out of his wet clothes. It isn't like I lied... I just gave the most extreme consequence.
It was a cold day, a mere 14 degrees outside. Plus, the wind was blowing a bit so it was probably even colder with the wind chill. My sister in law and I sat in the vehicle while the kids went down to the water. After awhile my niece came to the vehicle and said Jonathon wanted us to come to the water, so we headed to the creek.
Jonathon rarely goes in the water so I was surprised to see his shoes and about 6" of his pant legs wet. When questioned about how he got wet he said he'd slipped on the mud and slid into the water. With it being so cold out I told him we needed to leave and go home so he could get out of his wet shoes and clothes. He was NOT happy with me. He wanted to stay and throw rocks and sticks in the water. After a few minutes of trying to convince him by telling him he could get frost bite, his feet could get sick, and him not cooperating... I got a little desperate... okay, I got a lot desperate! He wouldn't listen to reason as he was still in a bad mood, so I told him he had to get in the car or his feet would get sick and he'd end up a peg leg! I know... it's horrible! But I can't exactly pick up a 225 pound 6'2" man and put him in the car! It did work. He got in the car, we got home and he got out of his wet clothes. It isn't like I lied... I just gave the most extreme consequence.
Friday, November 4, 2011
Gone
Last night I took Jonathon down to his bedroom to show him the memory boxes I had put together for him to go to when he wants to "spend time" remembering his Grampa DeVries, Grama Renner and cousin, Kimberley, all of whom have passed away within a year and a half.
We looked at the pictures and talked about how he could put things in the boxes if he wanted to. He wanted reassurance that our hearts were alive and that we weren't dead. We came back upstairs, he sat down on the couch, turned to me and said "Grampa DeVries isn't coming back is he."
Jonathon's language is usually broken but this time he clearly stated what he knew to be true. I'm glad to see he is gaining understanding of death and yet my heart breaks for him. He has lost people who had great love for him... I think his statement was an acknowledgement of his loss.
I hope I can help him understand that he can carry that love with him throughout his life. He was and is very loved.
We looked at the pictures and talked about how he could put things in the boxes if he wanted to. He wanted reassurance that our hearts were alive and that we weren't dead. We came back upstairs, he sat down on the couch, turned to me and said "Grampa DeVries isn't coming back is he."
Jonathon's language is usually broken but this time he clearly stated what he knew to be true. I'm glad to see he is gaining understanding of death and yet my heart breaks for him. He has lost people who had great love for him... I think his statement was an acknowledgement of his loss.
I hope I can help him understand that he can carry that love with him throughout his life. He was and is very loved.
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