Today is Mother's Day. I am so blessed to be a mother. So blessed to feel Jack's arms wrapped around my neck and smell his hair. Blessed to get wet kisses and hear him say "Happy Muhver's Day." I have much to be thankful for.
When we picked Jack up from Sunday School today, there was a table full of flowers that the children had made for their moms. I asked Jack if he made a flower, and he said "no, I didn't want to." It's a small paper flower - but I was sad that I didn't get one. While other moms were praising their childrens' artwork, I was ushering Jack out of the hallway before he had a meltdown. When I asked him if he had fun at Sunday School, he said "yes, they had a school bus." I asked him if he played with other kids in the classroom and he said "no, I played by myself." Tears filled my eyes at the thought of the other children playing together, and Jack sitting by himself, playing with a school bus. I asked him what they learned, and he couldn't tell me. Another bittersweet moment.
Motherhood is not at all what I thought it would be. My journey into motherhood has been filled with many more lows than I thought it would be. You have an expectation. An idea of what things will be like. Whether it's right or not, you expect motherhood to be filled with joy and laughter. And while we have had our share of laughter, our monotonous days are filled with tantrums, screaming, meltdowns, stimming, and repetitive behavior. Motherhood has become an experience that has stretched me thinner than I thought possible. I never thought that I would be the one raising a special-needs child. Never thought that I would be the one taking my child to therapy, special education classes, and more doctor's appointments than I can keep track of. But, here we are. This is our reality. We do what we do. We make it through each day and collapse into bed each night (for a couple of hours, at least!). We are continually learning how to best nurture and support Jack.
I have many moments of despair. Moments when I cry and yell and wonder what the purpose of all of this is. Moments when I want to give up and run away. Moments where I think that it's all just too hard and I can't go on one more minute.
But then I have moments of love. Moments when Jack smiles at me and I see that adorable dimple on his right cheek. Moments when he says or does something so absolutely hilarious that he has me laughing until I cry. Moments when he has a breakthrough and tries to do something that he wouldn't do before.
Mother's Day is bittersweet for me. Not only because of the challenges of raising a special needs child, but also because of the unfulfilled desire for another child. We watched the baby dedication at church this morning, and tears fell down my cheeks. Watching the precious newborn babies squirming in their parents' arms and hearing their baby sounds fill the room. As difficult as motherhood has been for me, I still have the desire to have another baby. There is still the yearning in my heart to have a sweet new baby to be a part of our family. God knows. He knows my desires and He knows the plans for our family. I am trusting and surrendering.
So....Mother's Day. A day filled with hugs and kisses, tears and worries. I am so blessed. I married a man that loves God and loves me. A man that loves our son and is dedicated to our family. I have a son that has such unique ways of showing me that he loves me. Even if he doesn't make me a paper flower, I know that he loves me beyond words. He makes me laugh and teaches me new things every day. I am so blessed.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Sunday, May 9, 2010
Thursday, February 18, 2010
True Love
My amazing husband wrote a heart-felt post in regards to Jack...it also includes an update to his sleep study. I'm copying it here so everyone can read it. :)
I am not much of a writer, so forgive any mistakes & apologies for the length of the note. I wrote this today about Jack and what an amazing child & blessing he really is.
No, this entry is not about crazy times as in fast running. I've still been training, but have been sidelined somewhat by a nasty cold. I managed 14+ (short considering I was over 20 the weeks prior) miles last week with a chest cold that's now a nice sneeze etc. I'm at 7mi this week with my first ever Half Marathon on Sunday the 14th.
This post is more about the crazy times in our lives. I'm stepping back to write something different this time. Something that is always on my mind, and is often reflected upon on my "Long Run" days.
Our son Jack, born in July 2005 was diagnosed with Autism Spectrum Disorder by our school district back in August 2008. He received a medical diagnosis back in September 09' from Fraser in Minneapolis.
When you first hear someone say "Your Child has Autism", you really don't know what to think. You're taken back by it. Sure, we knew something with our son was "off" due to some missed milestones, slightly quirky behaviors etc, but we were not assuming anything or jumping to any conclusions. Initially, I'll admit, I was in denial. The feeling of "That's not true" was frequent.
Our Jack is a very special boy, and I love him dearly. There are plenty of moments that I get frustrated (I've struggled with anger/quick temper forever!), but in the end I will give everything for this little boy who struggles every day to communicate with us. Jack is very verbal as far as autism goes, and knows an amazing amount of words. His autism certainly doesn't effect his amount of talking. Jack is very smart, but has trouble communicating thoughts that are his own. Echolalia effects Jack. Defined as "The involuntary parrot-like repetition (echoing) of a word or phrase just spoken by another person", echolalia can make Jack appear quite normal to a lot of people that do not know him, or those that may not understand a lot about Autism. If you meet Jack, and say "Hi, how are you", he knows the correct answer to be "I'm fine" or "Good, how are you". It's a VERY Rare occasion that we'll get an answer that reflects how he is actually feeling. For all we know, he can say "I'm fine", but be reeling inside with anxiety from any number of situations. Most of Jack's responses to any question posed to him are canned, meaning that he'll think for a brief amount of time, then provide a response he's heard from either myself, his mom or someone else. If he doesn't know "the answer", he'll give you a sheepish grin, laugh, or sometimes make an odd noise, or even on occasion, he'll just say poopie.
Jack's memory, both audio and visual is astounding. Take for example, listing to a music CD. One of his favorites is "Church Music", by David Crowder Band. He has had his own little CD player that has since been destroyed by his recent destruction faze. We provided him this David Crowder CD as he really enjoys their music. Within a week of him having this CD in his CD player, he had memorized the track number of ALL 17 tracks on the CD by way of listening to the first 2-3 seconds of any song. Now, w/o ANY prompting, we can play the Church Music album on the iPhone in the car and within 3 seconds of the song starting, he'll say "That's number 10" or "That's number 6" etc. He knows every track on the CD and can give you the track number of them regardless of the ORDER they're played back.
Jack's hearing is amazing. So much so that we think he hears nearly everything going on around him, all at the same time. Imagine for a second that you're in Grand Central Terminal, NY. Thousands of people walking, talking, trains, escalators, cash registers, cell phones etc. Now, imagine hearing all of these sounds at the same time and trying to process them. This is what it's like for Jack. Trying to take all of that in, all at once and process it. It get's overwhelming and can lead to melt down city because he can't otherwise express how he feels in those situations. We're learning as parents that we need to carefully plan outings with Jack and make sure that we talk to him about where we're going, what will be going on there, if it'll be loud or not, if there will be a lot of people etc. Doing this ahead of time can make all the difference in our day. Sometimes, he'll still "lose it", but that may be because he's tired as well.
Jack is also VERY schedule driven. This is common with autism and he appears to fit right into that mold of having to know what's coming next, when, how long. It's a difficult task to plan your days as structured as Jack needs them. There's a fine line between planning every minute of his day, vs. trying to teach him that schedules can sometimes change, or things might be different and that it's OK. We're adapting, and so is Jack.
Another big area that Jack struggles with is transitioning from one thing to the next. Sure, any kid that has to stop playing with toys or stop doing something they're enjoying to do something else will not like it. With Autism, this can be magnified to an extreme in any transition no matter how big or small. Jack occasionally struggles with processing these transitions whether big or small. Sometimes it can be as simple as pulling the car into the garage and going inside. We'll pull in, open the doors, unbuckle him etc and he's simply not ready, or hasn't processed yet that it's time to come inside. We've left him in the car on several occasions and he's done well with coming in on his own after a few minutes.
We have some crazy months coming ahead of us; For about the last year to year and a half, Jack's sleep has gone really down hill. He is up and out of his room multiple times 99% of nights. Sometimes, it'll be just 2-3 times a night that he'll wake up and need us to put him back to sleep, but it can be as many as 10-12 times a night. Regardless of how many times, he is up for the day at or before 5am. We've tried consistently putting him to bed later, say after 8:30-9PM, but that doesn't change anything. He still wakes multiple times and is up and ready to go by 5am. We initially inquired about this with his pediatrician and received the "maybe he doesn't need that much sleep" speech. After a couple times of mentioning sleep issues, it was suggested that we try melatonin for him. Melatonin is an over the counter regulator of serotonin. This would help Jack fall asleep quickly, but even with doses over 3mg, he wouldn't sleep consistently, or any later than 5am. Finally after a year of asking about it, his doctor put in a referral for a "sleep study" at MayoClinic in Rochester, MN.
This sleep study just occurred overnight on 2.9.2k10. Getting any child hooked up to more than 30 EEG sensors would be difficult, but factor in Autism and it's that much tougher. The AMAZING part of getting hooked up was that Jack was a TROOPER. His anxiety was obviously elevated, but he did a great job of letting them put sensors/glue/tape all over his head, legs, face, chin etc. He's one tough dude! I probably would've pitched a bigger fit than he did. Only one of us was allowed to stay overnight with him, and Stephanie decided she would do it. She is so amazing with Jack. Patience, compassion, kindness...you name it, she's all over it.
The morning after his sleep study was the follow up with the sleep doctor(s). This was probably the hardest morning we've had..even more so than hearing "Your son has Autism". We met with the doctors and in the beginning it was seeming like everything was good. Jack's oxygen while sleeping was good, heart rate was great, sleep/wake cycles are fine. The answer we got about why he might not sleep that well wasn't what we were expecting. They believe it may be due in large part to an attachment issue & Jack being so anxious all the time. Jack has ALWAYS slept in his own crib, bed etc, but they think that due to his anxiety levels, he may hit a "wake cycle" and get worried that we're not here or something, so then he has to come downstairs, realize that we're there, get put back to bed, and go back to sleep for a another couple hours or so. Repeat this process until 5am and then it's time to get up for the day.
It's what came after that explanation that totally threw us off. The doctor explained that Jack has an exceptional amount of brain "misfires" while he is sleeping. This occurs on the left side of his brain and was very frequent while sleeping. Then, it hurt more..the word seizure came out of the doctors mouth. She said the type of activity he's having in his brain while sleeping is prone/related to seizures. She advised that while he didn't have a seizure during the sleep study, it's likely that he's had several seizures of a non-clinical variety..meaning that we may never see them happening, and that he isn't convulsing etc, but that there is something going on that needs addressed. Immediately, it clicked with me that we've probably witnessed our son having a seizure on several occasions. Jack has these periods of 30 seconds to 1 minute where no matter what we do, we can't get his attention. He'll just sort of sit there, starting off into space and nothing seems to rouse him from that. Then, all of a sudden we'll get his attention and he's back to his usual self. Seizure? Who knows...but we're determined to find out!
It was with that, we learned that within the next month, he'll be having an MRI of his brain focusing on seizure something or other, and for that he would need to be put to sleep because it can take about an hour for a child to go through the process, and he would NEVER lay that STILL for THAT LONG. He also has to have another EEG, but this time it'll be while he's awake, not sleeping. Hopefully he does just as well this time with getting all the sensors hooked up. Once those appointments are done, we'll meet with a neurologist to review results and go from there.
In the meantime, we moved Jack's bedroom back downstairs next to our room, and will be on our toes even more now watching for any signs that something is wrong.
All of these struggles and trials aside, he is one amazing child, and is truly a gift to us. Through his Preschool, speech and occupational therapy, we're learning a lot about who he is. We're learning to work with him, and help him communicate his needs and true feelings to us. It's a long road, but we wouldn't trade it for anything.
I am not much of a writer, so forgive any mistakes & apologies for the length of the note. I wrote this today about Jack and what an amazing child & blessing he really is.
No, this entry is not about crazy times as in fast running. I've still been training, but have been sidelined somewhat by a nasty cold. I managed 14+ (short considering I was over 20 the weeks prior) miles last week with a chest cold that's now a nice sneeze etc. I'm at 7mi this week with my first ever Half Marathon on Sunday the 14th.
This post is more about the crazy times in our lives. I'm stepping back to write something different this time. Something that is always on my mind, and is often reflected upon on my "Long Run" days.
Our son Jack, born in July 2005 was diagnosed with Autism Spectrum Disorder by our school district back in August 2008. He received a medical diagnosis back in September 09' from Fraser in Minneapolis.
When you first hear someone say "Your Child has Autism", you really don't know what to think. You're taken back by it. Sure, we knew something with our son was "off" due to some missed milestones, slightly quirky behaviors etc, but we were not assuming anything or jumping to any conclusions. Initially, I'll admit, I was in denial. The feeling of "That's not true" was frequent.
Our Jack is a very special boy, and I love him dearly. There are plenty of moments that I get frustrated (I've struggled with anger/quick temper forever!), but in the end I will give everything for this little boy who struggles every day to communicate with us. Jack is very verbal as far as autism goes, and knows an amazing amount of words. His autism certainly doesn't effect his amount of talking. Jack is very smart, but has trouble communicating thoughts that are his own. Echolalia effects Jack. Defined as "The involuntary parrot-like repetition (echoing) of a word or phrase just spoken by another person", echolalia can make Jack appear quite normal to a lot of people that do not know him, or those that may not understand a lot about Autism. If you meet Jack, and say "Hi, how are you", he knows the correct answer to be "I'm fine" or "Good, how are you". It's a VERY Rare occasion that we'll get an answer that reflects how he is actually feeling. For all we know, he can say "I'm fine", but be reeling inside with anxiety from any number of situations. Most of Jack's responses to any question posed to him are canned, meaning that he'll think for a brief amount of time, then provide a response he's heard from either myself, his mom or someone else. If he doesn't know "the answer", he'll give you a sheepish grin, laugh, or sometimes make an odd noise, or even on occasion, he'll just say poopie.
Jack's memory, both audio and visual is astounding. Take for example, listing to a music CD. One of his favorites is "Church Music", by David Crowder Band. He has had his own little CD player that has since been destroyed by his recent destruction faze. We provided him this David Crowder CD as he really enjoys their music. Within a week of him having this CD in his CD player, he had memorized the track number of ALL 17 tracks on the CD by way of listening to the first 2-3 seconds of any song. Now, w/o ANY prompting, we can play the Church Music album on the iPhone in the car and within 3 seconds of the song starting, he'll say "That's number 10" or "That's number 6" etc. He knows every track on the CD and can give you the track number of them regardless of the ORDER they're played back.
Jack's hearing is amazing. So much so that we think he hears nearly everything going on around him, all at the same time. Imagine for a second that you're in Grand Central Terminal, NY. Thousands of people walking, talking, trains, escalators, cash registers, cell phones etc. Now, imagine hearing all of these sounds at the same time and trying to process them. This is what it's like for Jack. Trying to take all of that in, all at once and process it. It get's overwhelming and can lead to melt down city because he can't otherwise express how he feels in those situations. We're learning as parents that we need to carefully plan outings with Jack and make sure that we talk to him about where we're going, what will be going on there, if it'll be loud or not, if there will be a lot of people etc. Doing this ahead of time can make all the difference in our day. Sometimes, he'll still "lose it", but that may be because he's tired as well.
Jack is also VERY schedule driven. This is common with autism and he appears to fit right into that mold of having to know what's coming next, when, how long. It's a difficult task to plan your days as structured as Jack needs them. There's a fine line between planning every minute of his day, vs. trying to teach him that schedules can sometimes change, or things might be different and that it's OK. We're adapting, and so is Jack.
Another big area that Jack struggles with is transitioning from one thing to the next. Sure, any kid that has to stop playing with toys or stop doing something they're enjoying to do something else will not like it. With Autism, this can be magnified to an extreme in any transition no matter how big or small. Jack occasionally struggles with processing these transitions whether big or small. Sometimes it can be as simple as pulling the car into the garage and going inside. We'll pull in, open the doors, unbuckle him etc and he's simply not ready, or hasn't processed yet that it's time to come inside. We've left him in the car on several occasions and he's done well with coming in on his own after a few minutes.
We have some crazy months coming ahead of us; For about the last year to year and a half, Jack's sleep has gone really down hill. He is up and out of his room multiple times 99% of nights. Sometimes, it'll be just 2-3 times a night that he'll wake up and need us to put him back to sleep, but it can be as many as 10-12 times a night. Regardless of how many times, he is up for the day at or before 5am. We've tried consistently putting him to bed later, say after 8:30-9PM, but that doesn't change anything. He still wakes multiple times and is up and ready to go by 5am. We initially inquired about this with his pediatrician and received the "maybe he doesn't need that much sleep" speech. After a couple times of mentioning sleep issues, it was suggested that we try melatonin for him. Melatonin is an over the counter regulator of serotonin. This would help Jack fall asleep quickly, but even with doses over 3mg, he wouldn't sleep consistently, or any later than 5am. Finally after a year of asking about it, his doctor put in a referral for a "sleep study" at MayoClinic in Rochester, MN.
This sleep study just occurred overnight on 2.9.2k10. Getting any child hooked up to more than 30 EEG sensors would be difficult, but factor in Autism and it's that much tougher. The AMAZING part of getting hooked up was that Jack was a TROOPER. His anxiety was obviously elevated, but he did a great job of letting them put sensors/glue/tape all over his head, legs, face, chin etc. He's one tough dude! I probably would've pitched a bigger fit than he did. Only one of us was allowed to stay overnight with him, and Stephanie decided she would do it. She is so amazing with Jack. Patience, compassion, kindness...you name it, she's all over it.
The morning after his sleep study was the follow up with the sleep doctor(s). This was probably the hardest morning we've had..even more so than hearing "Your son has Autism". We met with the doctors and in the beginning it was seeming like everything was good. Jack's oxygen while sleeping was good, heart rate was great, sleep/wake cycles are fine. The answer we got about why he might not sleep that well wasn't what we were expecting. They believe it may be due in large part to an attachment issue & Jack being so anxious all the time. Jack has ALWAYS slept in his own crib, bed etc, but they think that due to his anxiety levels, he may hit a "wake cycle" and get worried that we're not here or something, so then he has to come downstairs, realize that we're there, get put back to bed, and go back to sleep for a another couple hours or so. Repeat this process until 5am and then it's time to get up for the day.
It's what came after that explanation that totally threw us off. The doctor explained that Jack has an exceptional amount of brain "misfires" while he is sleeping. This occurs on the left side of his brain and was very frequent while sleeping. Then, it hurt more..the word seizure came out of the doctors mouth. She said the type of activity he's having in his brain while sleeping is prone/related to seizures. She advised that while he didn't have a seizure during the sleep study, it's likely that he's had several seizures of a non-clinical variety..meaning that we may never see them happening, and that he isn't convulsing etc, but that there is something going on that needs addressed. Immediately, it clicked with me that we've probably witnessed our son having a seizure on several occasions. Jack has these periods of 30 seconds to 1 minute where no matter what we do, we can't get his attention. He'll just sort of sit there, starting off into space and nothing seems to rouse him from that. Then, all of a sudden we'll get his attention and he's back to his usual self. Seizure? Who knows...but we're determined to find out!
It was with that, we learned that within the next month, he'll be having an MRI of his brain focusing on seizure something or other, and for that he would need to be put to sleep because it can take about an hour for a child to go through the process, and he would NEVER lay that STILL for THAT LONG. He also has to have another EEG, but this time it'll be while he's awake, not sleeping. Hopefully he does just as well this time with getting all the sensors hooked up. Once those appointments are done, we'll meet with a neurologist to review results and go from there.
In the meantime, we moved Jack's bedroom back downstairs next to our room, and will be on our toes even more now watching for any signs that something is wrong.
All of these struggles and trials aside, he is one amazing child, and is truly a gift to us. Through his Preschool, speech and occupational therapy, we're learning a lot about who he is. We're learning to work with him, and help him communicate his needs and true feelings to us. It's a long road, but we wouldn't trade it for anything.
Wednesday, December 30, 2009
Plans
Each day, Jack and I have a conversation that goes something like this -
Me - "I am going to take a shower now."
J - "And after you take a shower?"
Me - "I am going to get ready."
J - "And after you get ready?"
Me - "I am going to do laundry."
J - "And after you do laundry?"
Me - "You will get dressed."
J - "And after I get dressed?"
Me - "I don't know!"
J - "And after I don't know?"
Me - "Jack, I don't know what we're doing today."
J - "And after I don't know?"
Me - "I DON'T KNOW!"
J - "AAAAAAAAAAAAHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!"
This can go on for hours. Jack will keep asking me "and after....?" until he gets a satisfactory answer. I often have to make things up, just so I can give him an answer that will appease him for the time being. Such a fun game!
When we can, Lonnie and I try very hard to make specific plans about where we are going to go, what order they are going to go in, and who is going to be present while we're going to these places. Why? Because Jack needs it that way. If we don't make a very specific plan about our activities for the day, Jack feels completely lost and out of control. He needs to know exactly what is going on. He is constantly wondering what activity is going to come next. In a world where not every waking minute can be planned or scheduled, this makes life a little challenging!
This week has been especially hard since school is out for winter break. School is a huge part of Jack's schedule and is kind of what we base our routine around. He knows that when he has school, every day pretty much looks the same. Without school, the days have less structure and more "free" time. This is so hard. While I try to be as scheduled as I can, there are days when there just isn't a schedule to go by! I have things to do around the house, we don't have any errands to run, it's snowing outside....the "nothingness" creates chaos!
So, here I go - back to answer the questions of "and after....?" We have plans for this afternoon. I can give him a concrete answer for a few hours. And soon enough, it will be time to start planning for tomorrow.
Me - "I am going to take a shower now."
J - "And after you take a shower?"
Me - "I am going to get ready."
J - "And after you get ready?"
Me - "I am going to do laundry."
J - "And after you do laundry?"
Me - "You will get dressed."
J - "And after I get dressed?"
Me - "I don't know!"
J - "And after I don't know?"
Me - "Jack, I don't know what we're doing today."
J - "And after I don't know?"
Me - "I DON'T KNOW!"
J - "AAAAAAAAAAAAHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!"
This can go on for hours. Jack will keep asking me "and after....?" until he gets a satisfactory answer. I often have to make things up, just so I can give him an answer that will appease him for the time being. Such a fun game!
When we can, Lonnie and I try very hard to make specific plans about where we are going to go, what order they are going to go in, and who is going to be present while we're going to these places. Why? Because Jack needs it that way. If we don't make a very specific plan about our activities for the day, Jack feels completely lost and out of control. He needs to know exactly what is going on. He is constantly wondering what activity is going to come next. In a world where not every waking minute can be planned or scheduled, this makes life a little challenging!
This week has been especially hard since school is out for winter break. School is a huge part of Jack's schedule and is kind of what we base our routine around. He knows that when he has school, every day pretty much looks the same. Without school, the days have less structure and more "free" time. This is so hard. While I try to be as scheduled as I can, there are days when there just isn't a schedule to go by! I have things to do around the house, we don't have any errands to run, it's snowing outside....the "nothingness" creates chaos!
So, here I go - back to answer the questions of "and after....?" We have plans for this afternoon. I can give him a concrete answer for a few hours. And soon enough, it will be time to start planning for tomorrow.
Wednesday, September 16, 2009
Oooooh.....HI!!!
Well hello there, bloggy land! Being at home over the summer with an incredibly demanding 4 year old leaves VERY LITTLE time to blog. Let alone very little time to pee by yourself. Haha...who am I kidding. Every mom knows that you never get to pee by yourself when you have little kids at home.
Jack started his second year of special education preschool this Monday. And I could not be more excited. Neither could he. He loves school, loves his teacher, and LOVES the bus. All he talks about is the bus. When I ask him how his day was at school, he talks to me about the bus. When I ask him who he played with at school, he tells me about the bus. When I try to find out what he had for a snack today, he goes on and on about the bus.
Jack had an autism evaluation in the beginning of September. It went really well and we really liked the psychologists we met with. Long story short, we walked away with a medical diagnosis of autism. Hearing that comes with a lot of mixed emotions. On one hand, we were relieved that they saw "it" too...that we weren't crazy and we aren't just bad parents. On the other hand, it's never easy to hear that your child will have extraordinary challenges throughout life and that there's something that makes them "different" from all of the other kids. The word "AUTISM" just never seems to lose it's weight. On that day, it hit us like a ton of bricks. They suggested that Jack receive clinical speech therapy and occupational therapy. So, we have an appointment at the end of this month with a pediatric rehabilitation center that offers speech and occupational therapies. They will do another evaluation, to see how much therapy he'll need and then we'll go from there. We'll be driving about an hour to each appointment...so I'm not looking forward to that, but I would drive much further than that if it meant doing something that helped Jack!
More Jack news - he has his first dentist appointment this afternoon. Yikes! I'll take pictures and share how that went. I am praying that we both hold it together and can reward ourselves with some Starbucks when it's all said and done.
My FABULOUS husband surprised me for my birthday (29....ahem) and got me a first-class ticket to visit friends in Sacramento. I am so excited to spend time with girlfriends and have a chance to relax. I also think that the time Jack and Lonnie spend together will be good for them. They'll have fun just being boys and hanging out while mom's gone.
Speaking of my fabulous husband - he decided a couple of months ago to take up running and start eating healthier. He has been doing awesome and I am so proud of him. Check out his running blog here - Fat People Run Too!
This year, I am involved with our local MOPS group as the Hospitality Coordinator. Yesterday was our first meeting and it was crazy! Crazy, but absolutely wonderful. It has been so much fun to prepare the theme, decor and "feeling" of the room this year. We went with a spa/relaxing-type theme and it is wonderful. I love all of the ladies that I am serving with and I am excited to be a part of this ministry.
Speaking of ministry - Lonnie and I are currently involved in starting up a new church in our city! It is called NewLife, and it's a campus of LifeChurch in Oklahoma City. It is involving a lot of time, energy and prayer...but it is exciting to see what God is doing here.
Do you see why it's been a challenge to update this thing? Life has been a little crazy around here! Hopefully with Jack in school, I'll have a little extra time to dedicate to the blog. Hopefully.
Jack started his second year of special education preschool this Monday. And I could not be more excited. Neither could he. He loves school, loves his teacher, and LOVES the bus. All he talks about is the bus. When I ask him how his day was at school, he talks to me about the bus. When I ask him who he played with at school, he tells me about the bus. When I try to find out what he had for a snack today, he goes on and on about the bus.
Jack had an autism evaluation in the beginning of September. It went really well and we really liked the psychologists we met with. Long story short, we walked away with a medical diagnosis of autism. Hearing that comes with a lot of mixed emotions. On one hand, we were relieved that they saw "it" too...that we weren't crazy and we aren't just bad parents. On the other hand, it's never easy to hear that your child will have extraordinary challenges throughout life and that there's something that makes them "different" from all of the other kids. The word "AUTISM" just never seems to lose it's weight. On that day, it hit us like a ton of bricks. They suggested that Jack receive clinical speech therapy and occupational therapy. So, we have an appointment at the end of this month with a pediatric rehabilitation center that offers speech and occupational therapies. They will do another evaluation, to see how much therapy he'll need and then we'll go from there. We'll be driving about an hour to each appointment...so I'm not looking forward to that, but I would drive much further than that if it meant doing something that helped Jack!
More Jack news - he has his first dentist appointment this afternoon. Yikes! I'll take pictures and share how that went. I am praying that we both hold it together and can reward ourselves with some Starbucks when it's all said and done.
My FABULOUS husband surprised me for my birthday (29....ahem) and got me a first-class ticket to visit friends in Sacramento. I am so excited to spend time with girlfriends and have a chance to relax. I also think that the time Jack and Lonnie spend together will be good for them. They'll have fun just being boys and hanging out while mom's gone.
Speaking of my fabulous husband - he decided a couple of months ago to take up running and start eating healthier. He has been doing awesome and I am so proud of him. Check out his running blog here - Fat People Run Too!
This year, I am involved with our local MOPS group as the Hospitality Coordinator. Yesterday was our first meeting and it was crazy! Crazy, but absolutely wonderful. It has been so much fun to prepare the theme, decor and "feeling" of the room this year. We went with a spa/relaxing-type theme and it is wonderful. I love all of the ladies that I am serving with and I am excited to be a part of this ministry.
Speaking of ministry - Lonnie and I are currently involved in starting up a new church in our city! It is called NewLife, and it's a campus of LifeChurch in Oklahoma City. It is involving a lot of time, energy and prayer...but it is exciting to see what God is doing here.
Do you see why it's been a challenge to update this thing? Life has been a little crazy around here! Hopefully with Jack in school, I'll have a little extra time to dedicate to the blog. Hopefully.
Tuesday, July 7, 2009
What's New
My posts lately have been more pictures and "fluff" and I haven't really talked about what's going on in our lives. So, whether you want it or not, here it goes!
*Jack is currently in summer school through the school district's special education program. He LOVES it. He loves school. He loves his teachers and his friends. He loves the bus. We have no doubt in our minds that putting him in this program was the right decision. He will start the regular school year in September and will most likely have the same teacher as last year...which we are super excited about. He'll be in preschool another year and then we will need to make the decision if we want him going to kindergarten or waiting another year.
*Jack is also currently on a waiting list for an autism evaluation with Fraser Child & Family Center in Minneapolis. Their wait list is forever long and he probably won't get in until the end of fall or beginning of winter. We are looking forward to this opportunity, though. It will provide a medical diagnosis for Jack and also will help refer us to other therapies that will help him (and us).
*Autism is something we never thought we'd have to deal with, and now we are becoming very familiar with it. Having Jack diagnosed by the school district was not an easy decision and not one that we came to lightly. However, the help that we've received from the school has been wonderful and we know that we've made the right decision. Jack has learned A LOT at school and we are all learning how to cope. Our days are very difficult, but we are learning how to deal with things. Life with Jack is stressful. Life with any 3 (almost 4) year old is stressful, but we are also working through a lot of speech, emotional and cognitive behaviors that just aren't typical. We know that God has made us Jack's parents for a reason. We believe that one reason is to shape us into better people. Jack requires us to use some of the qualities that we lack the most in - patience being #1.
*Lonnie's work is going well. He works from home and we've figured out how to make this work for us! It's been a wonderful thing having him work at home and I've become spoiled. When something in the house breaks, I don't have to wait for him to get home from work...I can just bug him in the middle of the day!
*I am becoming more involved with MOPS and I love it. I am going to be on the "Steering Team" next year and I am excited for the opportunity to work with other moms in our community. I am looking forward to strengthening friendships and meeting new people.
*Lonnie and I were able to go to Kansas City at the end of June - ALONE! Lonnie's mom flew out to watch Jack for the week and we drove to KS. Lonnie was scheduled to go there for a business trip, so I was happy to have the opportunity to tag along. We enjoyed quiet dinners, quiet drives and quiet nights. It was quiet. We could have adult conversation when we wanted to. We could go to bed late and wake up late (7 am IS late in our world). I was able to swim in the pool and lay out by myself. It was fabulous. Of course, we were anxious to get home and be with Jack again. But, our time away was priceless. I would encourage any couple with young kids to do everything they possibly can to get some overnight time away as a couple.
That's about it! We are enjoying summer and all that is has to offer. We've been to the water park several times, we picked strawberries, we've been to the park many times, and are soaking up the warmer weather. Of course, as I type this, it's thundering and raining outside...but who doesn't love a good summer storm?
*Jack is currently in summer school through the school district's special education program. He LOVES it. He loves school. He loves his teachers and his friends. He loves the bus. We have no doubt in our minds that putting him in this program was the right decision. He will start the regular school year in September and will most likely have the same teacher as last year...which we are super excited about. He'll be in preschool another year and then we will need to make the decision if we want him going to kindergarten or waiting another year.
*Jack is also currently on a waiting list for an autism evaluation with Fraser Child & Family Center in Minneapolis. Their wait list is forever long and he probably won't get in until the end of fall or beginning of winter. We are looking forward to this opportunity, though. It will provide a medical diagnosis for Jack and also will help refer us to other therapies that will help him (and us).
*Autism is something we never thought we'd have to deal with, and now we are becoming very familiar with it. Having Jack diagnosed by the school district was not an easy decision and not one that we came to lightly. However, the help that we've received from the school has been wonderful and we know that we've made the right decision. Jack has learned A LOT at school and we are all learning how to cope. Our days are very difficult, but we are learning how to deal with things. Life with Jack is stressful. Life with any 3 (almost 4) year old is stressful, but we are also working through a lot of speech, emotional and cognitive behaviors that just aren't typical. We know that God has made us Jack's parents for a reason. We believe that one reason is to shape us into better people. Jack requires us to use some of the qualities that we lack the most in - patience being #1.
*Lonnie's work is going well. He works from home and we've figured out how to make this work for us! It's been a wonderful thing having him work at home and I've become spoiled. When something in the house breaks, I don't have to wait for him to get home from work...I can just bug him in the middle of the day!
*I am becoming more involved with MOPS and I love it. I am going to be on the "Steering Team" next year and I am excited for the opportunity to work with other moms in our community. I am looking forward to strengthening friendships and meeting new people.
*Lonnie and I were able to go to Kansas City at the end of June - ALONE! Lonnie's mom flew out to watch Jack for the week and we drove to KS. Lonnie was scheduled to go there for a business trip, so I was happy to have the opportunity to tag along. We enjoyed quiet dinners, quiet drives and quiet nights. It was quiet. We could have adult conversation when we wanted to. We could go to bed late and wake up late (7 am IS late in our world). I was able to swim in the pool and lay out by myself. It was fabulous. Of course, we were anxious to get home and be with Jack again. But, our time away was priceless. I would encourage any couple with young kids to do everything they possibly can to get some overnight time away as a couple.
That's about it! We are enjoying summer and all that is has to offer. We've been to the water park several times, we picked strawberries, we've been to the park many times, and are soaking up the warmer weather. Of course, as I type this, it's thundering and raining outside...but who doesn't love a good summer storm?
Thursday, March 12, 2009
10 Things Every Child with Autism Wishes You Knew
I was given this handout today by Jack's preschool teacher and thought that it was SO informative. It's always a good reminder to view things through Jack's eyes and remember that the way he sees the world is different from the way we see it.
It is written by Ellen Notbohm, author of the book Ten Things Every Child with Autism Wishes You Knew.
1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?
2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated.
Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.
3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%…" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.
6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.
I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.
8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.
Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
10. Love me unconditionally. Banish thoughts like, "If he would just……" and "Why can't she….." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.
And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They may have had autism too.
The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead?
All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.
It is written by Ellen Notbohm, author of the book Ten Things Every Child with Autism Wishes You Knew.
1. I am first and foremost a child. I have autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?
2. My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It his means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia….I can't sort it all out. I am dangerously nauseated.
Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can't even tell where my body is in space.
3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%…" Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "Jamie really burned up the track," I see a kid playing with matches. Please just tell me "Jamie ran very fast."
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.
5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming up with a reply.
6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your PDA or day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations.
I won't lose the need for a visual schedule as I get older, but my "level of representation" may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.
8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don't know how to "read" facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it's not that I think it's funny. It's that I don't know the proper response. Teach me to say "Are you OK?"
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.
Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
10. Love me unconditionally. Banish thoughts like, "If he would just……" and "Why can't she….." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it.
And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They may have had autism too.
The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead?
All that I might become won't happen without you as my foundation. Be my advocate, be my friend, and we'll see just how far I can go.
Saturday, January 31, 2009
I cannot tell a lie
I haven't been posting much because I am finding it hard to be all "sunshine-y" right now. Jack's behavior has gotten worse recently and we're really struggling with how to handle it. I've always told myself that "things will get better" and have the mindset that he'll just grow out of most of this...but lately I've had the realization that things might not get better. Things might stay the same. Things might get worse. Jack will get bigger and stronger and smarter.
His listening skills have gone way down. He doesn't listen to most of the things we tell him or ask him to do. He yells and screams A LOT. He throws many tantrums throughout the day. A lot of what we say doesn't "register" with him and we get a lot of blank stares. Parts of his communication have improved, but other parts seem to be regressing. It doesn't seem to matter how we talk to him or how we discipline him - things just keep getting worse. It doesn't matter whether we talk calmly to him or if we yell at him - he reacts the same way. It doesn't matter whether we put him in time-out, try to re-direct him or ignore it - he reacts the same way. He yells and screams. And then he screams and yells some more. We spend quality time with him. We play with him. We read to him. We have a pretty well-structured day. We give him plenty of warnings as to what activities come next. We give him reasons. We love on him. We keep his routine consistent. We talk to him all of the time. And it seems that none of that makes a difference. His behavior (even if it is completely unintentional on his part) is like a slap in the face to us. We TRY. I wish there was an easy solution to this.
What makes this even more difficult is that no one else sees this. No one else sees the way Jack acts at home. He acts fine at school. His teacher has mentioned that she can tell he's "holding it together" at school...just because he's at school. He's absolutely adorable when we're in public and he smiles and says "hi" to all of the people. He's a ham at the doctor's office. Everyone just thinks he is the cutest kid ever. But once he's told something that he doesn't like or doesn't get his way or gets upset over something (that is invisible to us), he turns into a different child. And, let's be honest, you can't let a preschooler have their way all of the time. We still need to be parents.
Autism sucks. There's just no other way to put it. We have so much to learn and so much to figure out. We feel lost. We are tired of being yelled and screamed at. We are tired of repeating the same instructions hundreds of times. We are tired of not sleeping well. We are tired of the tantrums. Lonnie and I are just so, so tired.
His listening skills have gone way down. He doesn't listen to most of the things we tell him or ask him to do. He yells and screams A LOT. He throws many tantrums throughout the day. A lot of what we say doesn't "register" with him and we get a lot of blank stares. Parts of his communication have improved, but other parts seem to be regressing. It doesn't seem to matter how we talk to him or how we discipline him - things just keep getting worse. It doesn't matter whether we talk calmly to him or if we yell at him - he reacts the same way. It doesn't matter whether we put him in time-out, try to re-direct him or ignore it - he reacts the same way. He yells and screams. And then he screams and yells some more. We spend quality time with him. We play with him. We read to him. We have a pretty well-structured day. We give him plenty of warnings as to what activities come next. We give him reasons. We love on him. We keep his routine consistent. We talk to him all of the time. And it seems that none of that makes a difference. His behavior (even if it is completely unintentional on his part) is like a slap in the face to us. We TRY. I wish there was an easy solution to this.
What makes this even more difficult is that no one else sees this. No one else sees the way Jack acts at home. He acts fine at school. His teacher has mentioned that she can tell he's "holding it together" at school...just because he's at school. He's absolutely adorable when we're in public and he smiles and says "hi" to all of the people. He's a ham at the doctor's office. Everyone just thinks he is the cutest kid ever. But once he's told something that he doesn't like or doesn't get his way or gets upset over something (that is invisible to us), he turns into a different child. And, let's be honest, you can't let a preschooler have their way all of the time. We still need to be parents.
Autism sucks. There's just no other way to put it. We have so much to learn and so much to figure out. We feel lost. We are tired of being yelled and screamed at. We are tired of repeating the same instructions hundreds of times. We are tired of not sleeping well. We are tired of the tantrums. Lonnie and I are just so, so tired.
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