Sebastian is my almost 5 year old and is most definitely my funny man.
While getting dressed this morning, he says, "Mama, I got a wedgie! When I get a wedgie, some of my parts hang out!"
I almost snorted my morning tea out my nose....
Wednesday, June 29, 2011
Friday, June 24, 2011
Getting tonsils out
God, it's the WORST feeling, knowing your kids are in pain and not being able to do anything about it.
Our oldest son, age 6 (almost 7) had his tonsils out on Tuesday and watching him try to cope with the pain has been so difficult. I just want to take his pain and put it into myself.
We knew the whole tonsillectomy thing was coming. The poor boy had strep throat 5 times in the past year and a half, so it was not a surprise.
What made the whole process even more difficult is that our son has autism. He's smart and now very talkative (not so even a year ago!), but he still overly upset about things and can perseverate (or get stuck) on topics.
To prep him for the surgery, I took out several books from our local library on "getting your tonsils out." A few fiction and a few non-fiction books. We read them together and I know he looked through them again several times afterwards.
I went to our local Autism support group for suggestions from other parents, because I'm sure we aren't the only parents to have a child with autism go through surgery. One parents said that the hospital provided a story book with photos about the surgery center - to prepare our son, so he'd know what to expect. The hospital didn't know about the story book, but they did offer a tour of the surgery center. The night before the surgery we went to the hospital to check it out.
The tour was wonderful. The nurse met us at the door, called our son by name and took him back to the admitting area. There they had a bed with his name in tape on it, and all of the instruments the nurses would be using the next day in prep for the surgery - a stethoscope, a heart beat monitor, the hospital jammies he would wear... We even got to see the actual operating room!
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Our son was very excited about the surgery after the tour. He told everyone he saw that he was getting his tonsils out.
As his Mom, and knowing his challenges with Autism, I didn't think he would have problems getting into the surgery. I thought our challenges would come after the surgery, and I was right.
The nurse came and got us from the waiting room about 45 minutes later. My first words were, "How is he?" She smiled and said, "Well, he woke up MAD." And then I could hear him, and I knew what was happening.
A few things:
- He was mad because he thought this was going to be something fun, and it actually HURT, so it felt like a trick.
- He's aware of the IV. I mentioned this to the nurses before the surgery and they said they would wrap up the IV site on his hand in bandages to look like a mummy, but he KNEW what was going on.
So for 45 minutes, our son screamed. Non-stop. "Owchie," "I want to go home!" or "Get the tube OUT!"
The nurses smiled and said all kids wake up from anesthesia like this, but I've seen this kind of "freak out" before and it wasn't from being put under. He freaks out like this for any injection, strep throat culture test, and sometimes even getting his hair washed.
It's Autism.
He calmed down after the IV was taken out. "Despicable Me" was playing in the DVD player. Popsicles came at 5 minute intervals.
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And then we were home :)
Fast forward two days post-op. It's 10 a.m. and still in jammies on the couch watching Scooby Doo. But it's summer vacation now, so I don't care. He's been living off of grilled cheeses, french toast, bagels and water melon. And yes, popsicles.
We made it through just fine. We just needed a few more accommodations that others. And hopefully no more strep throat.
Our oldest son, age 6 (almost 7) had his tonsils out on Tuesday and watching him try to cope with the pain has been so difficult. I just want to take his pain and put it into myself.
We knew the whole tonsillectomy thing was coming. The poor boy had strep throat 5 times in the past year and a half, so it was not a surprise.
What made the whole process even more difficult is that our son has autism. He's smart and now very talkative (not so even a year ago!), but he still overly upset about things and can perseverate (or get stuck) on topics.
To prep him for the surgery, I took out several books from our local library on "getting your tonsils out." A few fiction and a few non-fiction books. We read them together and I know he looked through them again several times afterwards.
I went to our local Autism support group for suggestions from other parents, because I'm sure we aren't the only parents to have a child with autism go through surgery. One parents said that the hospital provided a story book with photos about the surgery center - to prepare our son, so he'd know what to expect. The hospital didn't know about the story book, but they did offer a tour of the surgery center. The night before the surgery we went to the hospital to check it out.
The tour was wonderful. The nurse met us at the door, called our son by name and took him back to the admitting area. There they had a bed with his name in tape on it, and all of the instruments the nurses would be using the next day in prep for the surgery - a stethoscope, a heart beat monitor, the hospital jammies he would wear... We even got to see the actual operating room!
Our son was very excited about the surgery after the tour. He told everyone he saw that he was getting his tonsils out.
As his Mom, and knowing his challenges with Autism, I didn't think he would have problems getting into the surgery. I thought our challenges would come after the surgery, and I was right.
The nurse came and got us from the waiting room about 45 minutes later. My first words were, "How is he?" She smiled and said, "Well, he woke up MAD." And then I could hear him, and I knew what was happening.
A few things:
- He was mad because he thought this was going to be something fun, and it actually HURT, so it felt like a trick.
- He's aware of the IV. I mentioned this to the nurses before the surgery and they said they would wrap up the IV site on his hand in bandages to look like a mummy, but he KNEW what was going on.
So for 45 minutes, our son screamed. Non-stop. "Owchie," "I want to go home!" or "Get the tube OUT!"
The nurses smiled and said all kids wake up from anesthesia like this, but I've seen this kind of "freak out" before and it wasn't from being put under. He freaks out like this for any injection, strep throat culture test, and sometimes even getting his hair washed.
It's Autism.
He calmed down after the IV was taken out. "Despicable Me" was playing in the DVD player. Popsicles came at 5 minute intervals.
And then we were home :)
Fast forward two days post-op. It's 10 a.m. and still in jammies on the couch watching Scooby Doo. But it's summer vacation now, so I don't care. He's been living off of grilled cheeses, french toast, bagels and water melon. And yes, popsicles.
We made it through just fine. We just needed a few more accommodations that others. And hopefully no more strep throat.
Back in the habit
Ok.
I've not been blogging in a while and need to get back in the habit. I always feel so much better when I'm able to put thoughts on screen, even if no one ever reads it. I write things down, and am somehow better able to let it go.
I've not been blogging in a while and need to get back in the habit. I always feel so much better when I'm able to put thoughts on screen, even if no one ever reads it. I write things down, and am somehow better able to let it go.
Sunday, February 6, 2011
Date Night with someone other than my husband!
My husband and I get two date nights a month. We've started a new date night once a week - with the boys. Since we have three boys, they don't get a lot of one-on-one time with us, so each week, a boy will get to choose a parent for his "date" and the activity he'd like to do with us. This way, each boy gets a turn at special time with Mama or Da.
It was our first time trying this tonight and Sebastian got to go first. He got a Date Night with Mama! I offered up a few choices for activities: Color Me Mine pottery place, ice skating at the local rink, or bowling. He chose bowling - and actually it was a perfect night to try this out, because the bowling alley was empty with everyone home for the SuperBowl. we had the place to ourselves and didn't have to wait in line or deal with throngs of people.
We got a bumper lane and the ball ramp. Sebastian, being only 4 years old, can't put his fingers in the holes quite yet, so he lifts the ball with two hands onto the ramp and gives it a push. Neither of us broke 100; I haven't bowled in YEARS. But we took turns, watched the scores on the screen, and had some laughs.
We only played one game; Sebastian was done after that. "My arms are tired, Mama..." I then gave him free choice on where to go for dinner. I offered up a Mexican restaurant because Sebastian loves tacos and I was hoping he wanted to try something new.
Sigh, but no. He thought the bowling alley was the coolest place EVER, and wanted to eat there. Burgers, fries and a slushie it is then. Was it our healthiest choice ever? No. Was there fruit or veggies involved? No.
But as he smiled at me with a blue mouth from the slushie, I knew he had a great time out on his first date with Mama.
It was our first time trying this tonight and Sebastian got to go first. He got a Date Night with Mama! I offered up a few choices for activities: Color Me Mine pottery place, ice skating at the local rink, or bowling. He chose bowling - and actually it was a perfect night to try this out, because the bowling alley was empty with everyone home for the SuperBowl. we had the place to ourselves and didn't have to wait in line or deal with throngs of people.
We got a bumper lane and the ball ramp. Sebastian, being only 4 years old, can't put his fingers in the holes quite yet, so he lifts the ball with two hands onto the ramp and gives it a push. Neither of us broke 100; I haven't bowled in YEARS. But we took turns, watched the scores on the screen, and had some laughs.
We only played one game; Sebastian was done after that. "My arms are tired, Mama..." I then gave him free choice on where to go for dinner. I offered up a Mexican restaurant because Sebastian loves tacos and I was hoping he wanted to try something new.
Sigh, but no. He thought the bowling alley was the coolest place EVER, and wanted to eat there. Burgers, fries and a slushie it is then. Was it our healthiest choice ever? No. Was there fruit or veggies involved? No.
But as he smiled at me with a blue mouth from the slushie, I knew he had a great time out on his first date with Mama.
Thursday, February 3, 2011
Stress Baking
When I get stressed, I bake.
Somehow, the combining of ingredients, mixing them together, putting them in the oven and getting something completely new is so soothing. And delicious.
I've been really stressed, and I think I should consider opening a bakery. At least I would have an outlet for my stress and I wouldn't feel like I had to eat what I bake.
My waistline can't take it.
Somehow, the combining of ingredients, mixing them together, putting them in the oven and getting something completely new is so soothing. And delicious.
I've been really stressed, and I think I should consider opening a bakery. At least I would have an outlet for my stress and I wouldn't feel like I had to eat what I bake.
My waistline can't take it.
Wednesday, February 2, 2011
D-Day
I think the world stopped moving for me on D-Day, or Diagnosis Day - the day in 2006 when my son, Tristan, was diagnosed with Autism. People on the streets, in their cars, and in stores kept going on with their lives around me, but my world stopped.
How could this happen? He was born healthy and was meeting all of his developmental milestones. He wasn't acting all "Rain Man" like, and I had seen Autism in my days as a Teacher's Aide in a special education school; Tristan did not do any of the behaviors those kids had - there was no repetitive hand flapping or rocking back and forth.
And yet there were things he did that puzzled me. He had a speech delay, but a strange one. He was really smart for his age, knew his letters and numbers by the time he was two and a half years old, would repeat lines of his favorite movies and could say words like "volcano," but couldn't hold a conversation. He had major tantrums and hated when I left him with anyone else.
I even uttered the words, "Do you think he has autism?" at one point, and was dismissed with a "Oh, that's silly."
We were having our second child at the time these red flags started popping up, and we all thought that perhaps he was upset about the impending arrival of the new baby.
But by the time Sebastian was 6 months old and Tristan was two and a half years old, we knew there was some problem. The day we KNEW something was wrong, we were at Disney World, the happiest place on earth. What kid doesn't love Disney? Tristan was having a really difficult time, and in line for rides or security, he would flip out, screaming about the wait in line, the close proximity of people to him. He even hit me and his Dad, not because he was being naughty, but because he was so upset, he had no outlet for his anxiety. That's when we KNEW.
And then D-Day, Diagnosis Day. "Your son has autism."
The days, weeks, and months that followed D-Day felt like a blur. Tristan was in 20 - 25 hours of therapy per week for more than two years. We had monthly team meetings, regular testing for delays, reviews of goals and objectives we wanted him to reach, and endless discussions about his progess.
In those years following D-Day, we watched our second son, Sebastian, with such a critical eye. Siblings of children with Autism have a much higher rate of being diagnosed with it as well. He began speech therapy at 18 months, but was discharged from therapies a year later. With a great sigh, we dodged the Autism bullet with Sebastian.
And in the mix of all that - an unplanned pregnancy. A third child - another boy, Emerson. Another son to watch with that critical eye. Again, Emerson needed speech therapy. we started him at 15 months this time, hoping that he would follow Sebastian in needing just a little help and would be discharged a year later.
That critical eye picked up a few "red flags" along the way, but they were small warning signs. He didn't like the tags in his clothes and preferred to be bare-footed most of the time. But a lot of kids are like that, I reasoned. He didn't like loud noises and hated the crowds of the holiday shopping. But I don't like that either, I reasoned.
But there were things I couldn't reason away: lack of meaningful eye contact, not always responding to his name, constant need for running and jumping.
And then, two weeks ago, there were were again. "Your son has Autism."
Second D-Day.
My world stopped again.
Somehow the second diagnosis seems more daunting than the first. The first time, we jumped in with both feet, with all of our energy. We were ready to get our son the help he needed, trying to get him to a place where he was doing the best he could. And it was HARD. So DIFFICULT. TIRING. EXHAUSTING.
But Tristan is now in that place where he is doing the best he can. We know the therapies work, because he's doing so well right now. Above-average in reading. Making friends at school. Participating in BoyScouts. In a regular First-Grade class, doing the same school work as every one else.
Now we KNOW the road that is ahead of us. We know how tiring and exhausting it is. Do we have the energy to start all over again? To travel this road once more?
It's not a matter of having the energy. You find that energy for your kids, no matter what. Our son needs help and we will get it for him. We will spend hours in meetings, therapies, doctor appointments - whatever it takes to get him to that place we know he can go.
So here we go again....
How could this happen? He was born healthy and was meeting all of his developmental milestones. He wasn't acting all "Rain Man" like, and I had seen Autism in my days as a Teacher's Aide in a special education school; Tristan did not do any of the behaviors those kids had - there was no repetitive hand flapping or rocking back and forth.
And yet there were things he did that puzzled me. He had a speech delay, but a strange one. He was really smart for his age, knew his letters and numbers by the time he was two and a half years old, would repeat lines of his favorite movies and could say words like "volcano," but couldn't hold a conversation. He had major tantrums and hated when I left him with anyone else.
I even uttered the words, "Do you think he has autism?" at one point, and was dismissed with a "Oh, that's silly."
We were having our second child at the time these red flags started popping up, and we all thought that perhaps he was upset about the impending arrival of the new baby.
But by the time Sebastian was 6 months old and Tristan was two and a half years old, we knew there was some problem. The day we KNEW something was wrong, we were at Disney World, the happiest place on earth. What kid doesn't love Disney? Tristan was having a really difficult time, and in line for rides or security, he would flip out, screaming about the wait in line, the close proximity of people to him. He even hit me and his Dad, not because he was being naughty, but because he was so upset, he had no outlet for his anxiety. That's when we KNEW.
And then D-Day, Diagnosis Day. "Your son has autism."
The days, weeks, and months that followed D-Day felt like a blur. Tristan was in 20 - 25 hours of therapy per week for more than two years. We had monthly team meetings, regular testing for delays, reviews of goals and objectives we wanted him to reach, and endless discussions about his progess.
In those years following D-Day, we watched our second son, Sebastian, with such a critical eye. Siblings of children with Autism have a much higher rate of being diagnosed with it as well. He began speech therapy at 18 months, but was discharged from therapies a year later. With a great sigh, we dodged the Autism bullet with Sebastian.
And in the mix of all that - an unplanned pregnancy. A third child - another boy, Emerson. Another son to watch with that critical eye. Again, Emerson needed speech therapy. we started him at 15 months this time, hoping that he would follow Sebastian in needing just a little help and would be discharged a year later.
That critical eye picked up a few "red flags" along the way, but they were small warning signs. He didn't like the tags in his clothes and preferred to be bare-footed most of the time. But a lot of kids are like that, I reasoned. He didn't like loud noises and hated the crowds of the holiday shopping. But I don't like that either, I reasoned.
But there were things I couldn't reason away: lack of meaningful eye contact, not always responding to his name, constant need for running and jumping.
And then, two weeks ago, there were were again. "Your son has Autism."
Second D-Day.
My world stopped again.
Somehow the second diagnosis seems more daunting than the first. The first time, we jumped in with both feet, with all of our energy. We were ready to get our son the help he needed, trying to get him to a place where he was doing the best he could. And it was HARD. So DIFFICULT. TIRING. EXHAUSTING.
But Tristan is now in that place where he is doing the best he can. We know the therapies work, because he's doing so well right now. Above-average in reading. Making friends at school. Participating in BoyScouts. In a regular First-Grade class, doing the same school work as every one else.
Now we KNOW the road that is ahead of us. We know how tiring and exhausting it is. Do we have the energy to start all over again? To travel this road once more?
It's not a matter of having the energy. You find that energy for your kids, no matter what. Our son needs help and we will get it for him. We will spend hours in meetings, therapies, doctor appointments - whatever it takes to get him to that place we know he can go.
So here we go again....
Snow Day
School is closed. Why? I'm not sure. I was expecting snow up to my hips this morning, but we only have 4 or 5 inches of snow, which in Rochester, New York, is nothing.
So that means all three boys will be home with me today. That's Day #2 of cabin fever with three kids under the age of 6.
I was watching the movie "About a Boy" the other night and Hugh Grant's character was talking about increments of time. Everything can be measured in 30 minute units - bath: 1 unit, movie: 3 units. Because thinking about time in larger chunks can be too daunting. So that is what I will try today.
Breakfast: 1 unit
Spongbob episode: 1 unit
Getting dressed and brushing teeth: 1 unit
Arts and crafts activity: 1 unit
Perhaps when the roads have cleared, we can go out for a little while, maybe to the grocery store and get some baking supplies. Baking cookies makes the house smell great and its at least 2 units of time!
Back to school tomorrow. Please.
So that means all three boys will be home with me today. That's Day #2 of cabin fever with three kids under the age of 6.
I was watching the movie "About a Boy" the other night and Hugh Grant's character was talking about increments of time. Everything can be measured in 30 minute units - bath: 1 unit, movie: 3 units. Because thinking about time in larger chunks can be too daunting. So that is what I will try today.
Breakfast: 1 unit
Spongbob episode: 1 unit
Getting dressed and brushing teeth: 1 unit
Arts and crafts activity: 1 unit
Perhaps when the roads have cleared, we can go out for a little while, maybe to the grocery store and get some baking supplies. Baking cookies makes the house smell great and its at least 2 units of time!
Back to school tomorrow. Please.
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