My son did FABULOUSLY well this morning getting his blood work done. I don't tell him very far beforehand what's going on, but I always tell him exactly what is going to happen shortly beforehand. I am always honest, and I never say that something won't hurt if it will. Blood work is "one quick pinch". I also always sing "Elmo's Song". So, he can trust me. I never, ever try to fool him. He's been through a lot of medical procedures and has been under general anaesthesia several times. He's had IV's, endoscopy (a tube with a camera that looks in the tummy and intestine), laryngoscopy (a tube with a camera that goes up the nose and down the back of the throat), an MRI, surgery, a five hour grueling growth hormone level test, innumerable blood samples taken, and I'm not even sure what else. So, we've been through a bit. I know there are kids who have to go through a lot more, and I'm grateful that this is all we'll have to do.
He's having another surgery in November to get his adenoids (lumps of lymph tissue above the tonsils in the back of the throat) out and have tubes put in his ear drums. In November, he has another neurologist appointment, a dentist appointment (I have to make one myself), has to more blood work done for his surgery, has an endocrinologist appointment, and Thanksgiving!
Busy month. And as I've mentioned before, specialists usually only have hours during the day during the week, so it's much easier for me not to work so I can take him to all his appointments.
Oh great. I'm just looking at my calendar, and I have 5:15 pm written on Tuesday, November 24...and that's it. I have no idea where I'm supposed to be at 5:15 pm. That's not good!
Friday, October 30, 2009
Thursday, October 29, 2009
Mr. Bump
I went to my first support group at my son's school today, and I got some really great news and some really great suggestions.
The psychologist at his school said that he does not display any aggressive behavior at school at all. This leads him to believe that this behavior will stop. He suggested that I redirect my son when he tries to play "boing" with my head (he hits me in the head repeatedly and says, "boing!"), hits, slaps, kicks, etc. I told him that I have plum run out of ideas of things to try to redirect him. Another lady in the group said that when she had a similar problem with her grandson, they began to use Mr. Bump. Mr. Bump goes everywhere. Whenever her grandson feels the need for any physical aggression, he takes it out on Mr. Bump.
I tried to buy Mr. Bump today at Walmart, but he wasn't there. So, I'm going to try again tomorrow at Target.
I tried to buy Mr. Bump today at Walmart, but he wasn't there. So, I'm going to try again tomorrow at Target.
I hope, I hope, I hope, that this works. Wish me luck.
Wednesday, October 28, 2009
Hi Mama!
Every day when my son gets off the school bus, I say hello, and I ask him how his day at school was. He is busy looking at the light on the steps of the bus, and the lever used to open and close the doors. While we're walking into our building and up the stairs, I ask him about his day...did he have music? Did he read a story today? Did he have arts and crafts? Did he play outside today? I give him time to answer, but he never does.
It's disheartening. He doesn't say hello or goodbye unless I cue him to.
This morning, I was talking to the bus driver and matron, and I said, "One day when he comes home, he'll say, 'Hi Mama". And my son said, "Hi Mama." It was very cute. But I know that he was just repeating what I said, since the right thing to say would have been bye bye, as I was getting off the bus and he was on his way to school. It was cute, though.
I hope that one day he will say hello and goodbye and I love you without just repeating. I hope.
And I hope he'll be potty trained and start to eat. Nearly five years of washing bottle parts and changing diapers is a long time. He can't help it. He gets lots of therapy for eating, and we're working on potty training. Sometimes he still urinates when we're changing him for the tub, and is surprised that something is coming out...there's just no awareness.
Well, time, patience, and love...time, patience and love.
It's disheartening. He doesn't say hello or goodbye unless I cue him to.
This morning, I was talking to the bus driver and matron, and I said, "One day when he comes home, he'll say, 'Hi Mama". And my son said, "Hi Mama." It was very cute. But I know that he was just repeating what I said, since the right thing to say would have been bye bye, as I was getting off the bus and he was on his way to school. It was cute, though.
I hope that one day he will say hello and goodbye and I love you without just repeating. I hope.
And I hope he'll be potty trained and start to eat. Nearly five years of washing bottle parts and changing diapers is a long time. He can't help it. He gets lots of therapy for eating, and we're working on potty training. Sometimes he still urinates when we're changing him for the tub, and is surprised that something is coming out...there's just no awareness.
Well, time, patience, and love...time, patience and love.
Monday, October 26, 2009
Unconventional Date
I've written before that there's an 85% divorce rate among parents of autistic children. It is for us to get a babysitter. I don't trust anyone I don't know, and my son can't tell me if anything bad happens.
I've also written that I have the best next door neighbors in the world, and this Friday, they're going to be watching our kids so that we can go out to dinner at a restaurant where children are not allowed. I am very excited.
However, in addition to this special outing, we make efforts to spend time alone together...even if we're not really alone.
Saturday night, it was pouring. So, we decided to go to the Danbury Mall. Usually when we go here, we take the kids on the merry go round, the choo choo train, let them play in the big play area, and let them go on all the little rides. Saturday, we stuck them in the carriages, and ignored them most of the evening. We each got one Godiva chocolate and fed them to each other. We strolled around the mall taking turns giving back rubs. We walked through Eastern Mountain Sports looking at kayaks and snowshoes, and through Williams & Sonoma at very expensive cutting utensils and expensive, unnecessary, cute acorn-shaped soup terrines. We stole kisses in the elevator.
Then we brought the kids on the choo choo and let them run around a little. My son charmed the train engineer, and the engineer gave him a free ride with Daddy. He was very nice. We tried to treat him to coffee or something, but he was just happy that our son was happy. How nice!
Tuesday, October 20, 2009
It's Important to Be Flexible
No, not like Elastigirl...
When you have a kid on the Autism spectrum, you have to be flexible about your expectations when you go somewhere.
Tonight we went to the Spooky Halloween Craft Night at our apartment complex. I was hoping my son might enjoy making some crafts. He usually likes to paint and cut and glue. However, tonight he wanted nothing more than to run around, or "wun awow" as he says. The clincher was that someone had brought two push toys, and my son just loves push toys. Then he found a remote control that he used as a phone. So, that is what we did.
I did do some painting with my daughter who was "all done" very quickly, and as she pulled her hand away from the project, she wound up hitting herself in the forehead with her paintbrush. We were painting the body of a spider, so she had a nice, big, black splotch over her left eye. It was very funny.
We didn't finish painting her spider because she was also excited about the push toys, especially since she's starting to walk all by herself. So, that is what we did. We didn't complete any crafts, but we all had a good time, and that's what counts.
When you have a kid on the Autism spectrum, you have to be flexible about your expectations when you go somewhere.
Tonight we went to the Spooky Halloween Craft Night at our apartment complex. I was hoping my son might enjoy making some crafts. He usually likes to paint and cut and glue. However, tonight he wanted nothing more than to run around, or "wun awow" as he says. The clincher was that someone had brought two push toys, and my son just loves push toys. Then he found a remote control that he used as a phone. So, that is what we did.
I did do some painting with my daughter who was "all done" very quickly, and as she pulled her hand away from the project, she wound up hitting herself in the forehead with her paintbrush. We were painting the body of a spider, so she had a nice, big, black splotch over her left eye. It was very funny.
We didn't finish painting her spider because she was also excited about the push toys, especially since she's starting to walk all by herself. So, that is what we did. We didn't complete any crafts, but we all had a good time, and that's what counts.
Trip to Florida, Part 2
Disney!!! My husband's worst Yahtzee game, EVER.
My little running man in the Florida room.
My little running man in the Florida room.
My little man dressed for swimming in Grandma and Grandpa's pool with his biting fish swimmies.
After dinner, my husband watched the kids while I unpacked everything and got the beds all set up for all of us to sleep in the guest bedroom.
I'll write about Disney in the next Florida post.
You can read my first installment about our trip to Florida here, which is about the car ride down.
When we finally made it to my in-law's we were so happy and relieved. The kids were very, very happy to get out of the car, too. The house has an attached garage, so we were able to unpack the car right into the house.
My Mother in Law had a nice dinner already prepared for us, and we ate it out in the Florida room, which is a large screened in room with a big in ground pool. It's a very nice place to sit in the evening, but it's a little hot during the day. My son was fascinated by the pool, as we knew he would be, and I was constantly on edge worrying that he might fall into the pool without my knowing it.
After dinner, my husband watched the kids while I unpacked everything and got the beds all set up for all of us to sleep in the guest bedroom.
We all slept very well. In the morning, my Mother in Law made us a very nice breakfast of eggs, sausage, bacon, and home fries. It was delicious. That day we did just about nothing all day (except chase my son and do whatever you need to do for the kids). We did spend a lot of time in the pool. Both kids absolutely loved being in the pool, and it felt great to get out of the heat.
The entire time we were visiting, I didn't have to wash a single dish or cook a single meal (although I did, out of hospitality and gratefulness). It was so nice to wake up in the morning to coffee that my Mother in Law made, breakfast, clean bottles, and not having to do anything but watch the kids.
The entire time we were visiting, I didn't have to wash a single dish or cook a single meal (although I did, out of hospitality and gratefulness). It was so nice to wake up in the morning to coffee that my Mother in Law made, breakfast, clean bottles, and not having to do anything but watch the kids.
That night we played a game of Yahtzee, which is one of our favorite games. My husband had to take a picture of his score sheet because it was the lowest score he has ever gotten. My Father in Law, on the other hand, got FIVE YAHTZEES!!!!! Wow!
The second day we were there we went to a party over my Sister in Law's house and got to see family we haven't seen in years...and some family we've never met. We had a wonderful time, and again, we spent a lot of time in the pool. By now, my son was starting to swim alone with his vest and swimmies on. I loved the swimmies because they looked like fish holding onto his arms with their teeth.
The next two days we did a whole lot of nothing again. Then the next day we went to Disney.
Disney was wonderful. It was exciting, fun, exhausting, and thrilling. It was so much fun to see it through my children's eyes. Even though they're young, I think they really enjoyed it, and I think my son will remember.
I'll write about Disney in the next Florida post.
Monday, October 19, 2009
First Steps!!!
Today my daughter took her first steps! I'm thrilled that my husband was home to see!
She also likes playing with the telephone by putting it up to her ear and saying, "Hi". She's just adorable.
She also likes playing with the telephone by putting it up to her ear and saying, "Hi". She's just adorable.
Sunday, October 18, 2009
First Birthday Party, Part 2
Nick the Balloonatic was there, and he made all sorts of neat balloons, including Abby Cadabby, who is sitting here in the middle of the gifts! The kids all had a great time running up and down the hall...my little running man is the second from the front. Daddy is manning the hall.
The birthday angel! The birthday girl's beautiful cake!
The birthday angel! The birthday girl's beautiful cake!
My daughter's first birthday party was wonderful. I don't think it could have been any better. Everything came together without a hitch (except I ran out of helium, so the balloon bouquets for the tables dwindled until one table had only one balloon LOL). I had plenty of help from family, especially my WONDERFUL husband. He got the kids bathed and dressed and all ready to go while I was at the hall with my sister, nephews, and cousin setting up for the party. He did an excellent job. Then he watched the kids for just about the entire party so that I could take care of anything that needed to be taken care of. Everything looked beautiful, everything tasted wonderful, and it was just so nice to see everyone, some of whom I haven't seen in years.
My daughter had a wonderful time, and she truly was the Belle of the Ball. My son had some of his friends there too, and they had a wonderful time running all over the place.
The weather wasn't even as bad as they had predicted. It was cold and rainy, but there was no ice or snow, so it wasn't so awful. By the time the party was over, it wasn't even raining.
P from the Knights of Columbus wasn't there, but a few other volunteers were, and they were extremely nice and helpful. The bar tab wasn't bad at all...no where near what I thought it would be. So, all in all, it was just a great day. Everyone was very generous, and my daughter got lots of wonderful gifts.
P from the Knights of Columbus wasn't there, but a few other volunteers were, and they were extremely nice and helpful. The bar tab wasn't bad at all...no where near what I thought it would be. So, all in all, it was just a great day. Everyone was very generous, and my daughter got lots of wonderful gifts.
Thank you God!
Saturday, October 17, 2009
First Birthday Party
Tomorrow is my daughter's first birthday party. I just finished making a list of things I need to bring to the venue as well of a to-do list of things that need to be completed when I get there before the guests arrive.
Planning for this party has been a journey. We had a very large first birthday party for my son, and although we always try to do for our daughter what we did for our son, we though we'd tone my daughter's birthday party down.
We live in a small apartment, and our immediate family numbers nearly 40 people, so having it at our place was out of the question. To save money, we decided that we would have the party outside in a park, and I would cook the food. We ordered discount party decorations, and had a nice, tiny budget. Ahhhh...perfect!
Then the weather forecast began to change...temperatures up to 30 degrees below normal! So, I knew I had to change the venue. I should have called my cousin or uncle, but I hate to bother people, so I figured I'd hunt a hall down on my own. How hard could it be? I looked for nearby halls with paternal benevolent associations and fire houses, but I couldn't find anything. I finally found one hall nearby at the Knights of Columbus. Woo hoo! We were set. It was a little expensive, but around what we expected. So, I put out notice to the nearly 60 people who were coming to the party that the venue had changed.
Then I started getting phone calls from P from the Knights of Columbus.
"Oh, by the way, I forgot to mention that you can't bring in any drinks of your own. You have to use our bar. The bar tender will be a volunteer, and it's another way we use to raise money for charity." Ugh. Another glitch in the budget. But, I had already told everyone the party was going to be here, so I didn't want to change it AGAIN and have people more confused than I had already made them.
RIIIIIING RIIIIIING
P from the Knights of Columbus again.
"Oh, by the way, did I mention that in order to use the kitchen to heat your food or use the refrigerator, there will be a fee?"
Um, no you didn't. And a high fee at that! Well, if I'm going to pay that much money to heat food, I may as well cater at that point instead of buying all the ingredients and spending all the time cooking. Sheesh. Budget busted.
At least it will be a very nice party...just like my son's. Hey, at least we tried!
Now they're predicting snow for tomorrow (and it snowed the other day, which was the earliest snowfall on record), so I'm very glad it will be inside.
Happy Birthday Baby!
Thursday, October 15, 2009
Snow!!!
Wednesday, October 14, 2009
Assimilation to the Northern Climate
I know that to some people, where I live is considered downstate New York, but from where I grew up in "the city", it's upstate New York, and there are some major differences I've experienced living here, especially in the winter. There is no plowing or salting until there is a considerable amount of snow on the ground, which makes driving conditions treacherous immediately. There is considerably more ice up here, and it stays colder longer because there's no sea breeze to melt the snow and ice. It is hilly. All these things combined can make it difficult to get around in the winter, especially with a front wheel drive car. My husband almost got stuck at work because he couldn't make it up the hills in the snow to get home, and he had to take the train home...then he had trouble getting home from the train station, and I couldn't help him. Just walking around is really difficult, and the ice isn't even cleared from the fronts of stores or parking lots. So, we've made some adjustments after living here through two winters (yes, it took us that long LOL). We don't have the money to go out and get four wheel drive vehicles, and we have no place to store snow tires, so those were not options. So, I did some research, and I found reasonably priced, well reviewed tire chains that go on quickly and easily (supposedly), and come off quickly and easily, and can be stored right in the car. Also, I got Yak Trax last year (you can read my experience with this HIGHLY recommended product here), and got two pairs for my husband too. I already had another pair of "ice walkers" that my Mom had gotten for me because I'm not very sure-footed. So, we'll each keep one pair in the house when we need to get to the car, and one pair in the car to get anywhere else so we're prepared.
So, hopefully, these things will make the winter more bearable and help us to feel less trapped, which is the only thing I don't like about the winter. Also, I won't worry so much about my husband getting stuck in his Corolla on the way home from work.
Tuesday, October 13, 2009
I Have the Best Next Door Neighbors!
I am so lucky, happy, and blessed to have wonderful people living next door to me. Today was my daughter's first birthday, and we went out for pizza. When we came home, in front of my door were home made cupcakes (from scratch!) and a birthday card for my daughter from my next door neighbors. It means so very much to me to have them.
My neighbor E just got a new standing mixer! I've always wanted one, so I will live vicariously through her. :) The cupcakes were one of her first projects, and they came out wonderfully well! She was hypercritical, but the one I ate was delicious! I'm sending the rest in with my husband to work. Tomorrow she and I are going to a cake decorating class. I'm looking forward to getting out, and I've always wanted to go to a cake decorating class. When her daughter E turns 1, I can make fancy cupcakes for her too. :)
My neighbors are even going to watch our kids one night and my husband and I are going to go out to dinner to a restaurant where no children are allowed. My neighbors know all about us and our kids, and they STILL want to do it. I keep asking her if she's sure and that we'll understand if she changes her mind, but so far it's a go. I think it will be okay. My son absolutely loves her husband, too, and with the two of them, hopefully all will go well. She's very, very patient with my son, and has helped me numerous times to get him up the stairs and in the apartment. I'm just waiting for them to pick a date for us to watch their little E.
Tonight while we were at the pizzeria, my son went to each and every table and said, "Hi!" to the people at each one. Everyone was very nice about it. He's so darn cute, but it's such an inappropriate thing to do. We're pretty sure he's going to be the first Autistic Mayor. The Governor is blind...why not?
My Daughter's First Birthday! and Tuesday Weigh-In
My daughter is one year old today!!!!! I'm so happy thinking back to one year ago when I met her for the very first time. It's been a sleepless, joyful first year.
And, I'm down another 2.6 lbs.! I'm VERY happy about that! I've lost 5.4 pounds in the past two weeks, which is incredible for me. That doesn't happen.
Changes I've made: We've been eating vegetarian, and trying to cut out as much sugar and processed food as possible (I still haven't cut out the Fiber One bars...). Although all my bloodwork is perfect, I'm very overweight, and that can't last forever, and my husband has extremely high triglicerides and high cholesterol, even though he's just barely overweight. So, I've been doing Weight Watchers Momentum Simply Filling using tips from Dr. Oz. Last night we had sausage and peppers. The sausage was made from soy protein and I cooked the onions and peppers in Pam and chicken stock (well, not totally vegetarian, huh? LOL). It wasn't bad. It will take some getting used to. On the upside, there were no little bone pieces or grizzle. For lunch we've been having salad. For snacks, fruit and small portions of walnuts or almonds (I don't like almonds, but my husband does). We get 1 oz. of 72% dark chocolate as a treat in the evening. I don't really care for dark chocolate, but it's better than no chocolate, so I'm working on getting used to it. AND, there's the exercise, which I've only been able to do twice with the kids having the flu and my car breaking down. So, I'm really, really happy about the progress, and best of all, we're getting healthier. I don't think I've lost more than 5 pounds in two weeks since I was a teenager. Pretty cool. I'm only 3 pounds away to being to my lowest weight in more than 15 years...that will be all the weight I gained back, gone. That's a good thing.
Happy Birthday Little Girl!!!!!!!!!!
And, I'm down another 2.6 lbs.! I'm VERY happy about that! I've lost 5.4 pounds in the past two weeks, which is incredible for me. That doesn't happen.
Changes I've made: We've been eating vegetarian, and trying to cut out as much sugar and processed food as possible (I still haven't cut out the Fiber One bars...). Although all my bloodwork is perfect, I'm very overweight, and that can't last forever, and my husband has extremely high triglicerides and high cholesterol, even though he's just barely overweight. So, I've been doing Weight Watchers Momentum Simply Filling using tips from Dr. Oz. Last night we had sausage and peppers. The sausage was made from soy protein and I cooked the onions and peppers in Pam and chicken stock (well, not totally vegetarian, huh? LOL). It wasn't bad. It will take some getting used to. On the upside, there were no little bone pieces or grizzle. For lunch we've been having salad. For snacks, fruit and small portions of walnuts or almonds (I don't like almonds, but my husband does). We get 1 oz. of 72% dark chocolate as a treat in the evening. I don't really care for dark chocolate, but it's better than no chocolate, so I'm working on getting used to it. AND, there's the exercise, which I've only been able to do twice with the kids having the flu and my car breaking down. So, I'm really, really happy about the progress, and best of all, we're getting healthier. I don't think I've lost more than 5 pounds in two weeks since I was a teenager. Pretty cool. I'm only 3 pounds away to being to my lowest weight in more than 15 years...that will be all the weight I gained back, gone. That's a good thing.
Happy Birthday Little Girl!!!!!!!!!!
Monday, October 12, 2009
Experiment #1: The Light (Bee-Lah!!!) Bulb
One of my son's obsessions is lights. He loves lights. No matter where we go, what we're doing, or what else I might be trying to show him, he has to point out anything that might be spinning, and....lights, which he calls, "bee-lahs". It's his own word for light. From reading, I've learned that autistic kids often make up their own words for things, and it's common for them to have obsessions. Rather than trying to get their minds off their obsessions, reading has suggested that they be used to involve the child in activities.
My wonderful husband saw a basic electronic experiment kit on the internet, and bought it to do the experiments with my son.
With the patience of several saints, my husband worked with our son on making a circuit with a switch that turned on a little LED (a light emitting diode).
The first step was to make sure that my son was secured into his therapy chair, because having the weight on his lap from the straps and having the input of the hard wood going into his back, bottom, and feet help to keep him focused...as much as he can be.
I think he really enjoyed himself, and I think my husband did too. I think it was a wonderful project for them to do.
My daughter now has the flu that my son had last week, and he's been home from school, so it's great that he had some individual attention focused on him.
Then my husband put together his Big Wheel. It was a good night. :)
My wonderful husband saw a basic electronic experiment kit on the internet, and bought it to do the experiments with my son.
With the patience of several saints, my husband worked with our son on making a circuit with a switch that turned on a little LED (a light emitting diode).
The first step was to make sure that my son was secured into his therapy chair, because having the weight on his lap from the straps and having the input of the hard wood going into his back, bottom, and feet help to keep him focused...as much as he can be.
I think he really enjoyed himself, and I think my husband did too. I think it was a wonderful project for them to do.
My daughter now has the flu that my son had last week, and he's been home from school, so it's great that he had some individual attention focused on him.
Then my husband put together his Big Wheel. It was a good night. :)
I Wish I Had Known...
Buzz-Off Cards
My son in bed with a school bus, a monster truck, a fire engine, a train, a music gym, two toy radios, a front loader, and a spray fan.
I love my son so much. I love my daughter just as much. Anything I can do to make things easier for both of them, and to make life enjoyable, I do. That includes getting even less sleep because I've been staying up late reading lately.
The more I read about autism, the more I understand the things my son does. I just wish I could have known sooner. I guess I could have read more when I suspected the diagnosis instead of waiting for a doctor to confirm my suspicions. Guilt, guilt, guilt.
Some things I have learned...
People use things called "Buzz-Off Cards" when their children have tantrums in public. My son had a terrible tantrum in a restaurant in Disney. This could have been for any number of reasons. I stopped him by bringing him outside and very quietly telling him I was furious with him. I guess maybe he stopped out of fear; I don't know. Now I feel guilty about getting so angry with him. People were leering at us from every other table. I thought we might get kicked out. It would have been helpful to have a card to give folks, and then maybe I could have been more patient and handled the situation better.
My son performs repetitive movements and exhibits obsessive compulsive like behaviors to calm himself. Since I read about that, I've been trying to do other things that calm him so that he doesn't need to continually hit me in the head. I hold down his hands and give him "tickles", or gentle stroking and rubbing. I only have to hold down his hands for a moment, because as soon as I start to rub him, he relaxes and USUALLY no longer feels the need to hit me in the head and say, "boing". It doesn't work all the time, but nothing ever does.
I read somewhere (of course, now I can't find it) that it's common for kids like my son to want to sleep with hard toys instead of soft, fuzzy ones. This is very true, and every night, I have to remove a plethora of toys from my son's bed so that there is room for him. I've started taking pictures of his nightly collections, because I think he's so terribly cute.
Well, I guess knowledge is power. I'd better keep reading. Thanks to my neighbor who was nice enough to give me an article she found in a magazine. I still have yet to read it, but it seems like I learn something new every day. It's comforting to know that my son isn't the only one who has the characteristics he has, and that although there are no hard rules, there are tools available that can make things a little easier.
I love my son so much. I love my daughter just as much. Anything I can do to make things easier for both of them, and to make life enjoyable, I do. That includes getting even less sleep because I've been staying up late reading lately.
Saturday, October 10, 2009
The Flu, Take Two
My daughter woke up from her nap this afternoon (very short nap, as usual) with a 103 degree fever. Alas, my son is feeling better today, and my daughter falls ill.
However, at the moment, you'd never know. Medicated by Motrin, she is playing quite happily. I'm not expecting to get a lot of sleep tonight. Last night she kept waking up, and now I know it's because she wasn't feeling well.
And my car died again. Ah well.
So goes the week.
However, at the moment, you'd never know. Medicated by Motrin, she is playing quite happily. I'm not expecting to get a lot of sleep tonight. Last night she kept waking up, and now I know it's because she wasn't feeling well.
And my car died again. Ah well.
So goes the week.
Friday, October 9, 2009
PDD-NOS and Obsessive Compuslive Tendencies
My son has PDD-NOS, which is on the autism spectrum, and you can read more about it in another post I wrote here.
For me, the most difficult part of PDD-NOS to deal with are the obsessive compulsive tendencies. My son hits me in the head continually, for hours, saying, "boing". This is besides his aggressive behaviors of pulling out my hair, pushing me, throwing things at me, running over my feet with toys, and trying (and unfortunately succeeding) to do these things to his one year old sister (well, she'll be one on Tuesday).
He's been home all week with the flu, and his behavior has been escalating. I wrote about it most recently here.
Today I felt like I just couldn't take it anymore, and had enough of being abused. I put both kids in their rooms and went out on the balcony and just stood out there for a very long time.
The problem with obsessive compulsive actions in children with PDD-NOS is that they enjoy them. People with OCD are bothered by their obsessions and compulsions. Not kids will PDD-NOS. They find them comforting. So, that makes it extremely difficult to stop these behaviors. That is why, no matter how many times I say no, or stop, or hands to yourself, or quiet hands, my son will not stop hitting me. It will not stop. It may never stop. This is what I have to learn to live with, and it is very hard. We will be seeing a pediatric psychiatrist, as well as a behaviorist, and I have an appointment with the psychologist at his school. For now, there's nothing I can do.
I know I have to take it one day at a time, but there are days when I imagine this being the rest of my life, and I can't imagine how I will continue this way. But I have to. He can't help it, and he needs me.
Oh, it's so difficult. It really and truly is hard.
Has anyone had any experience with this? If you have any advice, it would be most appreciated.
Thursday, October 8, 2009
Driving to Florida
Excellent investment for our trip!
My son running at the Georgia welcome center rest stop...you can just see a hand and a foot. My camera is rarely quick enough to catch him. :)
I am finally writing about our vacation to Florida.
We decided to go down to Florida to visit my husband's parents, but it was too expensive for the four of us to fly down. So, we decided we'd take my Camry, which only has 160,000 miles on it for a little drive down south. Because we have two kids and just the car, we were wondering what to do with all the stuff we were going to need to transport. So, I started doing some research, and we wound up purchasing a Thule roof rack system from Rack Attack. I chose that company because I found their demonstration on how to install the rack on You Tube, and because they offered free shipping. To go along with the roof rack, we got a cargo bag, which I don't ever remember seeing before. I have seen boxes hitched to the tops of cars and trucks, but never a bag (of course now that we have one, I notice them everywhere). Since we live in a small apartment and wouldn't have any place to store a box, a collapsible bag was a good solution. So, I hunted on Amazon for the cheapest, most reliable and highly rated bag. We wound up getting the Highland KarPak. It worked fantastically well, keeping everything dry through the deluges we drove through on the way home.
So, we were ready to pack up the car. I made a list of what the four of us needed, and spent two days packing. It took longer than we thought it would (of course) to get going, and we wound up leaving two hours later than we had expected. Since we planned to drive through the night, it didn't really matter.
I was very nervous about driving through the night. I have never driven such a long distance before. The longest car ride I've ever taken was eight hours long. This would be closer to 24 hours. I was hoping I would be able to stay awake, I was worried about other people staying awake on the road and being sober, and I was worried about how the kids would handle the ride. It's a long ride for an infant and a four year old...especially one with PDD-NOS and ADHD.
So, finally, by 9:30 Friday night, August 14, we started the car, and WE WERE OFF!
I was so excited. I've always believed in the saying that getting there is half the fun, and I was so happy to be able to spend so much time with my family.
I was doing the first leg of the drive. The kids looked so cute in their PJ's. I had my Starbucks frapuccinos and Twizzlers at the ready. My son joined me and had some Twizzlers too, which is very unlike him, because he doesn't usually eat anything. He looked like the Joker by the time he was done with red all around his mouth.
It was pleasant driving with no traffic, my daughter was out cold and my husband was sleeping on a nice, fluffy pillow be brought from home. My son became a boon companion. He loves riding in the car. I never know how much information he understands, but he seemed to know we were off on a very long car ride to visit Grandma and Grandpa and Minnie and Mickey. He was much too excited to sleep, and he was just adorable. I really enjoyed the company, too. I got us down nearly to Washington D.C. By 2:30 I needed to stop to get some sleep. Unfortunately, I have a horrible time falling asleep in the car, but I did sleep until most of the way through Virginia. It was around 4:30 and my son was still up, and my daughter woke up. So, we found a Kohl's parking lot, and I fed her and changed her, and rocked her, and eventually she fell back to sleep, and my son finally fell asleep. My husband made it all the way to North Carolina. We stopped at a diner and had a breakfast that included, of course, grits! They were pretty good. We fed and changed the kids and dressed them, and we were on the road again. I got us down to South Carolina, and we stopped for lunch at South of the Border. I've seen bumper stickers from there since I was a kid. It was such a funny place...very much a tourist trap...but it had a bathroom and some of the best fried chicken I've ever had. Then, we were on the road again. We stopped again in Georgia at the Georgia welcome center, and we let the kids run around. It felt so good. It was extremely difficult to get back into that car, and it was extremely difficult to get the kids back into that car.
I was very disappointed that everything looked the same the whole way down. I95 doesn't provide much to look at. Trees are nice and all, but it gives you no reference point as to where you are. The biggest clue to having crossed into Dixie are all the Piggly Wigglys.
We cheered when we passed the Florida state border, and the last couple of hours seemed to be the longest part of the ride. Finally, at 8 pm, we pulled up to Mom and Dad's house, exhausted, sick from coffee, and so, so happy to be done with driving for awhile.
We were very grateful to God that we all were delivered safely to our destination.
Wednesday, October 7, 2009
Ignoring Unwanted Behavior Doesn't Always Stop the Unwanted Behavior
My son will keep escalating his behavior no matter how much I ignore him, until it is impossible to ignore him because he's close to being seriously injured.
Today was a difficult day. It was very windy outside, so we couldn't even go out for a walk, and my son is too sick to take anywhere indoors, so we were stuck in our small apartment.
Besides aggression today and his OCD tendency to hit me repeatedly in the head and say, "boing", my son was in climbing mode. No matter what I did, how much patience, how many different positive ways I tried to tell him to stop, to stay on the ground, keep his feet on the ground, he needed to get down, he kept climbing onto the top of the rocking chair. My son does not have good balance, and falls easily, so I'm afraid he will fall and get hurt. After hours of failed attempts at getting him to stop all the naughty things he was doing all day, I gave up and ignored him. This might be enough to stop some children. Not mine.
This resulted in him wrestling his ride-on school bus to the top of the rocking chair, and then proceeding to sit up on top of the bus on the back of the chair. He then proceeded to try to get my pictures off the wall. He almost succeeded in getting one off, and then he started trying to knock down the very large, very heavy, glass covered picture, and that was when I gave up on the notion that ignoring him might get him to stop. Thankfully, his father came home shortly afterwards. The behavior continued until bedtime. I hope tomorrow is a better day.
Tuesday, October 6, 2009
Tuesday Weigh-In After a Fun Weekend
We had a really nice weekend. We went to a birthday party on Saturday, and we went apple picking on Sunday afternoon. As you can see from the pictures, my son was NOT running...I knew something was up. He had been coughing, but by Sunday night, he was sick. By Monday morning, he was really sick. Unfortunately, he has the flu. Ugh. AND he had the flu shot weeks ago, so we think he has the H1N1 virus. It's not nice, and I feel so bad for him. Unfortunately, there's not much to do for him but clean up what comes out, and make sure enough fluid gets in. He gets nebulizer treatments three times a day. A nebulizer is a machine that creates a mist of medicine that he breathes in, and the medicine opens up his airways making sure he can breathe. Because he has breathing problems, and has since he was born every time he gets sick, we're concerned about pneumonia, which is what generally winds up killing the kids who get this virus. Dehydration is another big problem, but so far, he's okay with that.
So, I'm not bringing him to Weight Watchers, but I'll do my weigh-in at home. Several weeks ago, we invested in a new scale that's accurate. It actually matches the scale at Weight Watchers. It wasn't expensive, but I did research on which scale to buy rather than just going out and getting whatever was on sale. I weighed myself this morning and added two pounds for clothes, and I've lost 2.8 pounds. That's almost three pounds! I'm very happy about that. I'm still 7.4 pounds higher than I was a few months ago, but I'll get there, and pass it. I'm sure. I'm finally not disgusted and feeling hopeless and horribly ashamed that I gained some of the weight back. I'm just losing it again. And when it's ten, not thirty pounds. I'm still 32 pounds down altogether, and I think that's pretty good.
I am also proud that although I couldn't go to my exercise class yesterday because of my son, I still went to the park a little later and did what I could remember of the routine by myself. I somehow managed to do it in a half hour instead of an hour, which is why I really like to go to a class to get pushed, but it's still 30 more minutes of activity than I've been doing, and it was all high intensity, which is also something fairly new for me...have inhaler, will run! My son got a kick out of watching me run and do jumping jacks. My daughter was too engrossed in "Pat the Bunny" to care.
So, here's to another good week, and I hope that my poor son gets better and my daughter isn't getting sick...she wasn't herself yesterday. I hope I don't get sick too...it makes it horribly difficult to take care of kids with the flu if you have it yourself. I got the flu shot too, but not the H1N1 vaccination, so I'm vulnerable. Ugh.
Friday, October 2, 2009
Stroller Strides...Ouch, Ouch, Ouch!
Oh boy. I FINALLY made it to my second Stroller Strides class. This one was even harder than the first. I thought maybe I'd do a little better today. Nope. There were two other moms there besides the instructor and me, and oh boy, I was so far behind everyone. I knew I'd be going to exercise with the skinny, fit mamas, but I'm hoping that if I exercise with them, I'll be one of them. They were very nice. I have never, ever worked out so hard, and once I was sure I was going to vomit. I didn't, thank goodness. It was a really rough class. It's worth 11 activity points because it's a high intensity work out for the entire 60 minutes. I've never run so much. I've never done so many sit ups of every type. I couldn't talk the entire time, and I could hardly breathe. Thank God for my inhaler...without it, I wouldn't have been able to breathe, and I never would have made it through the class. This is why I could never make it through an aerobics class...I couldn't breathe. Now, I can stay at a high intensity of exercise for a whole hour. I didn't keep up, but I did finish, and I did do everything everyone else did. I'm very proud of that.
Owl Babies, Again
I just ordered the board book version of my son's favorite book, "Owl Babies". You can read my first post about the book, here. One of my son's issues is that he can be very destructive. He's destroyed three sets of blinds, broken many of his toys, and torn apart many of his books. Even his favorite book, "Owl Babies". I have repeatedly taped the poor book back together again, but it's standing on its last leg. I found the book in board book form. This does not mean it won't be destroyed...my son has torn apart even large board books (and I don't know why). But, we read it several times a day, and the old book is disintegrating beneath my fingers. Also, my daughter absolutely adores books, and she's very upset that I won't let her touch this one. She'll be very happy to have a book she can handle.
Thursday, October 1, 2009
Reprieve
My husband came home a few minutes after my last post while my son was happily playing by himself in his room. I felt completely defeated. My son had one of his aggressive days. Separating him from his sister for safety's sake (and from me so that I can regain my patience)by letting him play in his room is one of the techniques recommended by his school behaviorist. I've been doing some reading, and it seems that aggression is very typical in autistic children, especially those with PDD like my son who are in the autism spectrum. Now that he finally has a diagnosis, it's so helpful to be able to compare him to children like him rather than typically developing children. It's not just me dealing with these problems.
My husband played with the kids while I cooked dinner, which was delicious. I made steamed chicken and broccoli with garlic sauce. Then I took a very long, hot shower with Bath and Body Works Sandalwood Rose Stress Relief Aromatherapy body wash. I felt a billion times better. We all took a ride to get my car from the mechanic's...hurray! Then I took my daughter to the supermarket to pick up a couple of things while my husband got our son ready for bed. When I got home, I finished getting him ready and gave him lots of snuggles and kisses, and we played and laughed. Then, of course, he hit me in the head. But, because I have a wonderful husband who gave me a reprieve and some respite, I just quietly said, "Don't hit Mommy."
I am happy that I did not seek refuge at the Dairy Queen or Baskin Robbins. Today I sought refuge where I could really be helped...in other people. Thank you to my Mommy and my husband for listening to me vent and decompress, and thank you to my husband for helping me so much when I know that he's tired after a long day of work.
It can be very isolating being a mother of a child with special needs because a lot of people don't understand why my son acts the way he does, and I think people who do must get sick of hearing me talk about the things we go through. I'm so blessed to have my husband who helps me and my Mommy who listens to me. I am going to be joining a support group as well. I know I need to talk to other people who go through the same experiences and know that I'm not alone. Now that my son has a diagnosis, I feel validated in going to a support group, where I didn't before.
I am blessed.
God Give Me Patience
Some days are harder than others. Today is a rough day. Today is a day I pray continually for patience, but it doesn't always come. My son is on a hitting and throwing spree. No matter what I do, he will not stop hitting my daughter and me and throwing objects (large ones too) all over the house. I have tried every technique every professional has told me to try with no success. It just depends on the day. Some days my son is as sweet as pie, and others, he's impossible to manage. My husband will be home in a few minutes, so until then, I put my son in his room to play because I'm so angry at him. I know I shouldn't be angry and I should remain unemotional and work on discipline, but there comes a point where I am literally beaten down, and my daughter is too. I even yelled, which I hate to do. So, at least my daughter and I won't get hit, and my son won't get yelled at. It's a temporary solution, and maybe not a good one, but until my husband gets home to give me some respite, it's all I can think of to do for now. I feel horrible.
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