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 Jack. Show all posts
Showing posts with label Jack. Show all posts
Sunday, May 9, 2010
Wednesday, May 5, 2010
Motherhood in pictures
Kristen at We Are THAT Family is having a giveaway and asking moms to show pictures the define "motherhood" for them. Here are some that mean the most to me....
For anyone that doesn't know, I had a less than desirable birth experience and had to be put under general anesthesia. Here are a couple of pictures from the recovery room as I was just waking up.
My mom. This picture speaks so much about a mother's love to me.
Awake enough to meet.
There is nothing that can prepare you for the exhaustion of the first days at home.
He rarely slept. So when he did, we wanted to take pictures.
The first time he had a really, really bad cold. My heart broke.
At a pumpkin patch, 2007.
Kisses through the bike trailer.
That smile. I can't get enough of it.
Love.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?
Tuesday, March 24, 2009
Why God Didn't Make Eggs Blue
I was in a funk this morning. I decided to snap out of it and have a [somewhat] fun day with Jack. I declared it "BLUE" day. Everything would be blue.
We started with a blue bath.
We wore all blue clothes (including underwear).
We moved on to watching Blue's Clues.
We played with blue shaving cream on the table.
We had a blue lunch. (Unfortunately, this was the only thing I took a picture of. I think the title of this post speaks for itself when you see the pictures below.)
We had 4 blue M&Ms.
BLUE soy milk, BLUE noodles, BLUEberries, and BLUE scrambled eggs (looked so gross).
"I really am not too sure about this."
"I suppose I'll give it a try."
"Can I have my M&Ms now?"
That's pretty much where BLUE day ended. Jack took a nap (HOLY COW!) and was in a really rotten mood after he woke up. He really had fun with the blue theme, though. I definitely think there will be more days like this in the future.
We started with a blue bath.
We wore all blue clothes (including underwear).
We moved on to watching Blue's Clues.
We played with blue shaving cream on the table.
We had a blue lunch. (Unfortunately, this was the only thing I took a picture of. I think the title of this post speaks for itself when you see the pictures below.)
We had 4 blue M&Ms.
BLUE soy milk, BLUE noodles, BLUEberries, and BLUE scrambled eggs (looked so gross).
"I really am not too sure about this."
"I suppose I'll give it a try."
"Can I have my M&Ms now?"
That's pretty much where BLUE day ended. Jack took a nap (HOLY COW!) and was in a really rotten mood after he woke up. He really had fun with the blue theme, though. I definitely think there will be more days like this in the future.
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.
Wednesday, November 5, 2008
The thing I haven't really talked about yet
At Jack's 3 year well-child checkup, we filled out a questionnaire for the pediatrician, just answering questions about tasks that Jack could accomplish, his language/comprehension skills, and his overall development. As it turns out, he was pretty behind on almost all of the areas that were measured (4 out of 5). So, we were referred to ECSE (Early Childhood Special Education) which is through our local school district. Jack went through several evaluations, all done at our home, and they compiled all of this information into a report. He went through speech, psychological, autism and occupational therapy evaluation. After they were done with this process, we were informed that Jack meets the criteria for a diagnosis of Autism. Specifically, high-functioning autism, or Asperger's.
We experienced so many emotions when we received his diagnosis. We felt relief, because we knew that we weren't crazy and that other people noticed that there was something "off" about Jack too. We felt anger, because who were these people that barely knew our son to come in and tell us that there was something wrong with him? We were sad, because our only son was not "normal." We were guilty, because there's a part of you that wonders if you were the cause of these problems.
Jack's main symptoms include problems with language comprehension, echolalia (repeating what he hears us say, whether it's immediate or delayed), sensory issues, problems focusing, being very schedule-oriented, not being interested in other children, and having a hard time with transitions or new things.
All of this to say...Jack started preschool this week! He is going to the ECSE preschool, 4 days a week in the morning. He started on Tuesday. Today was his first day taking the bus. So far, it seems like he's really enjoying it. He really likes his teacher and she is an awesome lady. Today he actually named some of the kids in his class for me! There are 8 kids in his class (including him) and 4 adults...so he really gets a lot of quality attention. He meets one-on-one with a speech therapist and also gets some time with an occupational therapist.
When we dropped him off yesterday, he waved "bye" to us as he walked into the classroom and had a big smile on his face! When we put him on the bus this morning, he was so excited to ride the bus, but once he realized that we weren't going with him, he got a very concerned look on his face and didn't smile as they were driving away....but he did great and made it home safe and sound!
Here are some pictures of my BIG boy and his first couple days of school!!!
Standing at the front doors of the school.
Oh my gosh, he's gotten so big. When did this happen?
Putting his backpack in his cubby with his teacher.
Waving bye!
All buckled in! First time on the bus, today.
We experienced so many emotions when we received his diagnosis. We felt relief, because we knew that we weren't crazy and that other people noticed that there was something "off" about Jack too. We felt anger, because who were these people that barely knew our son to come in and tell us that there was something wrong with him? We were sad, because our only son was not "normal." We were guilty, because there's a part of you that wonders if you were the cause of these problems.
Jack's main symptoms include problems with language comprehension, echolalia (repeating what he hears us say, whether it's immediate or delayed), sensory issues, problems focusing, being very schedule-oriented, not being interested in other children, and having a hard time with transitions or new things.
All of this to say...Jack started preschool this week! He is going to the ECSE preschool, 4 days a week in the morning. He started on Tuesday. Today was his first day taking the bus. So far, it seems like he's really enjoying it. He really likes his teacher and she is an awesome lady. Today he actually named some of the kids in his class for me! There are 8 kids in his class (including him) and 4 adults...so he really gets a lot of quality attention. He meets one-on-one with a speech therapist and also gets some time with an occupational therapist.
When we dropped him off yesterday, he waved "bye" to us as he walked into the classroom and had a big smile on his face! When we put him on the bus this morning, he was so excited to ride the bus, but once he realized that we weren't going with him, he got a very concerned look on his face and didn't smile as they were driving away....but he did great and made it home safe and sound!
Here are some pictures of my BIG boy and his first couple days of school!!!
Standing at the front doors of the school.
Oh my gosh, he's gotten so big. When did this happen?
Putting his backpack in his cubby with his teacher.
Talking to the bus driver as his friends were getting off the bus.
Waving bye!
All buckled in! First time on the bus, today.
Friday, October 31, 2008
Away!
Jack dressed up as "Super Jack" for Halloween. He loved it! We had a hard time coming up with a costume this year. We couldn't find a store-bought costume that we liked and I ran out of time to order one online. And I didn't want to spend $30 for a costume that he would wear once. So, we ended up coming up with Super Jack and I managed to put it together myself! Unfortunately, someone didn't really like wearing the mask, so it ended up being up on his forehead most of the day. But, he was still super cute! His favorite thing to do was grab his cape and pretend he was going to fly and say "Super Jack - AWAY!"
Jack also received a Halloween surprise in the mail from Grandma! He got a very cool car toy that shoots cars down ramps, some candy, a pumpkin cup and some cookies to decorate. He loved it all and the car toy is one of his favorite toys now. Thank you, grandma!
Jack also received a Halloween surprise in the mail from Grandma! He got a very cool car toy that shoots cars down ramps, some candy, a pumpkin cup and some cookies to decorate. He loved it all and the car toy is one of his favorite toys now. Thank you, grandma!
Thursday, October 23, 2008
Viral
We've discovered that Jack loves watching funny cat/dog videos on the internets. Unfortunately, this means that we have to be very careful about what we click on when we're visiting youtube. Some of those (OK, A LOT of those) videos just aren't appropriate for a 3 year old - let alone a 30 year old.
Anyway - here is some video of Jack laughing at this video.
And here is another one of our favorites. :)
Anyway - here is some video of Jack laughing at this video.
And here is another one of our favorites. :)
Wednesday, October 22, 2008
Spiderman
It seems that Jack caught the "climbing bug" a little late. Most toddlers start climbing fairly early (18 months - 2 years old?), and we thought that we were fortunate that Jack didn't seem to be much of a climber. Oops. We thought too soon. Here's some pictures of the latest mountain Jack has conquered.
Wednesday, October 15, 2008
A Boy and His Dog - Part II
Jack has been sick this week, so we've been spending a lot of time inside. Buster's new "bed" is the couch (unfortunately), so Jack's enjoyed snuggling with Buster when they're both in the mood to be still (which is almost never). And, I think Buster secretly enjoys it too!
I was telling Jack to be nice to Buster, so Jack assured me that he would "just hold his tail." So he did.
Saturday, October 4, 2008
Wednesday, October 1, 2008
A Boy and His Dog
We've had Buster for over a year now. Jack has grown to love him and loves playing with him. He has even started bossing the dog around. We figure that since he doesn't have a sibling, he needs someone to boss around - so the dog gets to be the brunt of the bossing. Here are some pictures of my boy and his dog playing in the yard this morning.
Chasing Buster.
The Stand-off.
"Buster's maybe kinda tired."
The good dog.
Here's my other "boy" and his dog.
Thursday, September 18, 2008
Nana's Visit!
Nana and Mr. Cheeky playing on the floor.
I wish this picture would've turned out better! Jack is singing Smashmouth's "Allstar" song at the Children's Museum.
Learning how to use crutches. I'm sure this skill will come in handy at some point down the road.
Getting ready to roll a ball down the ramp.
Sliding.
Looking at fish with Nana.
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