Friday, August 29, 2008
Please pray for our friend, Cody
Cody will be heading in to surgery in about an hour to have a VNS inserted. We hope that the surgery goes well and Cody and family will be back home soon. Please pray for a speedy recovery for our friend, Cody and strength for the entire Graves family. To read more about Cody, and his surgery please visit his website.
Sickies x 2
The little ones came down with summer colds. Ethan is worse than Kaylee. Both are extremely grumpy this morning. Ethan stayed home from school and Kaylee stayed home from therapy. Kaylee also has some teeth coming in, so she hasn't been happy for the last few days. They have each been on a crying jag all morning. Time to break out the ear plugs! We are in for a fun weekend!
Thursday, August 28, 2008
Ring Ring, Meltdown Crisis Hotline
I was a little alarmed by the phone call I received from Javi's teacher this afternoon. Apparently, Javi had had one of his 4 alarm fire meltdown's at school today. We are not totally clear on what caused the meltdown, but it has made us evaluate whether or not Javi was ready for such a huge transition to non-severely handicapped (NSH). While we are not quite ready to throw in the towel and pull him out of the program, we are going to try to figure out if he is just anxious about the change, or whether he needs more support than they can offer him.
I spoke pretty candidly with the teacher when she called. She said she felt she could handle his behaviors, but felt that if meltdowns like the one he had today were a regular occurrence, we needed to evaluate whether or not this is the right fit for him.
I am hoping that this was just a one time incident, since this was a huge change for Javi. I think it would be a huge change for anyone to be at a new school, new friends, new teacher, new way of doing everything. I guess we had to expect a little backlash.
It's hard not to be the rescuer in this situation. My first instinct was to go and pick him up, take him away from all of it and protect him. The teacher had said that he calmed down and he was starting to eat his lunch. She said it would probably be a good idea for him to stay, since he may think that any time he had a big enough meltdown, that he could be rescued. I agreed with her. She did a good job working through it, since he manage to clam down. She said that she would call if he just couldn't handle it and needed to be picked up. While I don't think that the meltdown had anything to do with him trying to escape anything or because he wanted to see how much he could get away with. I think he just had reached his limit with the stress of all the changes and this was his way of expressing it.
He did manage to finish out the day and take the bus home. We talked about what had happened when he got home and how to work through things and tell people when he needs a break when he is feeling frustrated.
I hope he has a better day tomorrow.
For more information on autistic meltdowns, visit this link...I think it's important for people to be aware and understand this is not a behavior that happens as a result of poor parenting or undisciplined children. They can happen for many reasons. Change, overstimulation, disappointment, frustration, extreme emotions of any kind can cause a meltdown.
Note to self...
Always check the Diaper Champ for a garbage bag. You never know when your husband will be a nice daddy and take the full bag out. I assumed that I was the only one that emptied it, so silly me, I keep throwing diapers in!! The horror!! The putrescent aroma that filled the air upon unmasking the lid to the dreaded diaper chamber. One whiff had me gagging all the way down the stairs. I carried the can down as if it were radioactive waste. My husband reminded me that all that came out of my delicate, pretty princess. As if I needed reminding. One whiff and I remembered all the nasty nappies that him been thrown in there all week.
Maybe I need to give her less raisins...
Maybe I need to give her less raisins...
Tuesday, August 26, 2008
My Cherub
I took this picture of Kaylee while she was sleeping this morning. All that I could think of was she looked just like a cherub. I was trying to rush out of the house because we were running late for physical therapy, but this was too cute. I had to stop and appreciate this sleeping angel and take a pic.
Doesn't she look like she is playing her horn?? Maybe she was dreaming of her time when she was an angel?
I swear I didn't move her. This was her natural position when I walked in her room. Awe...she's definitely a keeper.
Doesn't she look like she is playing her horn?? Maybe she was dreaming of her time when she was an angel?
I swear I didn't move her. This was her natural position when I walked in her room. Awe...she's definitely a keeper.
Sunday, August 24, 2008
Festival of Sail 2008 Pics
We had a great time at the Festival of Sail in downtown San Diego. The highlight of our trip was taking the ferry across the San Diego Bay from Coronado. Here are some pics from our day at the festival. Please click on the badge below to view the whole album.
www.flickr.com
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Relationship Development Intervention
After spending countless times feeling lost on how to build a solid reciprocal relationship with Javi and for him to build these types of relationships with others, I think I may have finally found the answer to our prayers.
Javi has a strong desire to socialize with friends, but sadly, as he gets older, most peers his age are less tolerant of his behaviors. They don't always know how to relate to Javi, unless it's one of Javi's preferred topics. He can carry on a conversation with people, but he many times will spit out random sentences that only make sense to him. He will tell jokes that make sense to him, then he laughs a kind of nervous fake laugh, that I have come to think is very cute, but I'm sure his peers are puzzled by. He has a very difficult time reading people's body language and giving people personal space. I have noticed over the years that kids his age are becoming increasingly intolerant of his behavior. When Javi was five, kids didn't seem to mind that he was a little different. At six, they began to realize that he wasn't like other kids. At seven, kids just began to ignore him at the park, despite making his best effort to be social. Now at eight, kids can be just flat out mean to him, which breaks my heart. I try not to be the hovering mother, but it is difficult in terms of safety for Javi and sometimes for the other child. There have been a handful of times where I have seen Javi make a new friend that he is able to play and carry on conversations with. When it does happen, I almost burst in to tears of joy to see him having a truly reciprocal conversation with another child his age. For the most part, I am trying to explain to Javi, that he needs to give people space at the pool or at the park and just try to relax. He can get so excited at times, I think of him as that cartoon we saw as kids with the big dog that has the little pet that he is squeezing the heck out of it until it's eyes pop out and saying "I'm going to love him and hug him and squeeze him and call him George." Javi tends to do this to many prospective friends that he meets, more figuratively than relatively, for the most part. Yes, at times he does squeeze them when he is having a desire for sensory input himself. This is the point where I am usually explaining to the other child's parent that he has Autism and he doesn't mean to be hurtful, he just needs sensory input.
After speaking with a friend of mine last month who also has a child with Autism, she had told me that she planned to start RDI therapy for her son in lieu of just the traditional ABA. He is currently in ABA, but felt that his main area of need was mostly based around social aspects. I had heard of RDI before, but I thought of it as another pie in the sky type therapy that we would probably never qualify for through the regional center and could not afford to pay for out of pocket, so I just cataloged it and said maybe I'll look in to it someday. At the time, we had been making a lot of headway with behavior modification, so I didn't think we really needed it either.
We have had a lot of compliance issues with Javi in our home and even though we use the systems that were taught to us by countless behavior consultants, teachers and trying things that other parents have tried, we have yielded very few results. We will find a system that works, it will work for a while, then Javi becomes bored with the system and the behaviors would start to increase again.
We have about six sessions left of B Mod and have made very little consistent progress. Like I said, things will work for a while, then Javi starts to loose motivation, even though we have slightly tweaked his "privileges" to an even more favorable outcome should he reach a "level 5 charge", he gets stuck in a downward spiral and has a hard time recovering. I struggle with his behaviors and counteracting them pretty much on a daily basis, which have not gotten better with the addition to his changes with his school, teacher and having to make all new friends. I try to empathize with him, but at the same time, I have to enforce rules to ensure that everyone makes it through each day in one piece, both mentally and physically.
The bond between mother and child is there with Javi, it's just different than it is with Kaylee and Ethan. I'm sure many parents of children with Autism can agree with me there. Their needs are just different. Javi didn't have that "rubberband effect" as a baby and toddler. If we walked down the beach together and he took off at a run, he wouldn't look back at 20 paces to make sure I was right behind him. He didn't care who picked him up as a baby, a perfect stranger was just as good as me as long as they took him or gave him what he wanted. He didn't reach out for me or anyone unless it was to move him to something he wanted. He just had a different way of doing things. It wasn't that he didn't love me. I know he loves me, it was just different, that's all. If there is anything I long for in life, it's to have that infinite bond with Javi. To know what he's thinking and know how he puts it together in that brain of his. To fill in those links that are missing in our bond and the bond he has with other people in his life. I am hopeful that RDI will be the simple answer for us. To empower us as parents and feel that we have a stronger understanding on how to develop our relationship with him. Most important, to help him become more independent and be able to build relationships with people outside our family.
RDI:
Think about your dreams of a typical day in your child's future. Do you hope someday, he or she will:
Not only talk fluently, but engage in genuinely curious conversations?
Delight in a true friendship?
Feel a sense of pride in being able to contribute to his or her community?
Enjoy the excitement and comfort of a boyfriend or girlfriend and maybe even get married and have children?
Feel capable and confident living an independent lifestyle?
Experience the satisfaction and rewards of successful employment?
The goal of the RDI® Program is to provide the majority of people on the autism spectrum with the potential to attain a true quality of life.
For more on RDI, please visit their website.
Javi has a strong desire to socialize with friends, but sadly, as he gets older, most peers his age are less tolerant of his behaviors. They don't always know how to relate to Javi, unless it's one of Javi's preferred topics. He can carry on a conversation with people, but he many times will spit out random sentences that only make sense to him. He will tell jokes that make sense to him, then he laughs a kind of nervous fake laugh, that I have come to think is very cute, but I'm sure his peers are puzzled by. He has a very difficult time reading people's body language and giving people personal space. I have noticed over the years that kids his age are becoming increasingly intolerant of his behavior. When Javi was five, kids didn't seem to mind that he was a little different. At six, they began to realize that he wasn't like other kids. At seven, kids just began to ignore him at the park, despite making his best effort to be social. Now at eight, kids can be just flat out mean to him, which breaks my heart. I try not to be the hovering mother, but it is difficult in terms of safety for Javi and sometimes for the other child. There have been a handful of times where I have seen Javi make a new friend that he is able to play and carry on conversations with. When it does happen, I almost burst in to tears of joy to see him having a truly reciprocal conversation with another child his age. For the most part, I am trying to explain to Javi, that he needs to give people space at the pool or at the park and just try to relax. He can get so excited at times, I think of him as that cartoon we saw as kids with the big dog that has the little pet that he is squeezing the heck out of it until it's eyes pop out and saying "I'm going to love him and hug him and squeeze him and call him George." Javi tends to do this to many prospective friends that he meets, more figuratively than relatively, for the most part. Yes, at times he does squeeze them when he is having a desire for sensory input himself. This is the point where I am usually explaining to the other child's parent that he has Autism and he doesn't mean to be hurtful, he just needs sensory input.
After speaking with a friend of mine last month who also has a child with Autism, she had told me that she planned to start RDI therapy for her son in lieu of just the traditional ABA. He is currently in ABA, but felt that his main area of need was mostly based around social aspects. I had heard of RDI before, but I thought of it as another pie in the sky type therapy that we would probably never qualify for through the regional center and could not afford to pay for out of pocket, so I just cataloged it and said maybe I'll look in to it someday. At the time, we had been making a lot of headway with behavior modification, so I didn't think we really needed it either.
We have had a lot of compliance issues with Javi in our home and even though we use the systems that were taught to us by countless behavior consultants, teachers and trying things that other parents have tried, we have yielded very few results. We will find a system that works, it will work for a while, then Javi becomes bored with the system and the behaviors would start to increase again.
We have about six sessions left of B Mod and have made very little consistent progress. Like I said, things will work for a while, then Javi starts to loose motivation, even though we have slightly tweaked his "privileges" to an even more favorable outcome should he reach a "level 5 charge", he gets stuck in a downward spiral and has a hard time recovering. I struggle with his behaviors and counteracting them pretty much on a daily basis, which have not gotten better with the addition to his changes with his school, teacher and having to make all new friends. I try to empathize with him, but at the same time, I have to enforce rules to ensure that everyone makes it through each day in one piece, both mentally and physically.
The bond between mother and child is there with Javi, it's just different than it is with Kaylee and Ethan. I'm sure many parents of children with Autism can agree with me there. Their needs are just different. Javi didn't have that "rubberband effect" as a baby and toddler. If we walked down the beach together and he took off at a run, he wouldn't look back at 20 paces to make sure I was right behind him. He didn't care who picked him up as a baby, a perfect stranger was just as good as me as long as they took him or gave him what he wanted. He didn't reach out for me or anyone unless it was to move him to something he wanted. He just had a different way of doing things. It wasn't that he didn't love me. I know he loves me, it was just different, that's all. If there is anything I long for in life, it's to have that infinite bond with Javi. To know what he's thinking and know how he puts it together in that brain of his. To fill in those links that are missing in our bond and the bond he has with other people in his life. I am hopeful that RDI will be the simple answer for us. To empower us as parents and feel that we have a stronger understanding on how to develop our relationship with him. Most important, to help him become more independent and be able to build relationships with people outside our family.
RDI:
Think about your dreams of a typical day in your child's future. Do you hope someday, he or she will:
Not only talk fluently, but engage in genuinely curious conversations?
Delight in a true friendship?
Feel a sense of pride in being able to contribute to his or her community?
Enjoy the excitement and comfort of a boyfriend or girlfriend and maybe even get married and have children?
Feel capable and confident living an independent lifestyle?
Experience the satisfaction and rewards of successful employment?
The goal of the RDI® Program is to provide the majority of people on the autism spectrum with the potential to attain a true quality of life.
For more on RDI, please visit their website.
Friday, August 22, 2008
Flapping His Heart Out
It's been a while since I have really posted about Javi and his behaviors. I have had questions here and there about how Javi flaps. This is his self stimming behavior. We don't mind that he flaps, but we would like him to stop using objects when he does flap. The straws with the paper are affectionately called "Flappy Sticks". We find bits of toilet paper and tissue all over the house, which has be come somewhat of a safety issue with Kaylee crawling. If she puts a large enough piece in her mouth, she could choke on it. He also leaves the straws out on occasion, which are also a hazard to Kaylee. We are working with behavior modification to try to curb this urge to use a flapping tool. We are also trying to help Javi find other things to occupy his time, as he will resort to flapping whenever he has idle time or is bored. If he is engaged in an activity, he seldom flaps unless he gets frustrated. In that case, we let him regulate himself by flapping a bit. We are trying to limit it to certain areas as much as possible, as it is also a safety issue for Javi, since he can tend to block everything out but the flapping. He tries to do it in the parking lot, in the street and places where it's just not appropriate because of safety concerns.
Today he had a great day! We try to keep him busy. He seems to do very well when there are structured activities, of course. We went to the park after school, then we came home and changed to go swimming, then he drew pictures while the little ones napped, then we watched Jon and Kate + 8 which is our thing to watch together while the little ones nap. Then we played wii, followed by dinner, more art, then baking cookies, having popcorn and watching a Ratatouille. We had very little flapping today only for a few minutes to regulate before dinner.
We are so proud that Javi had such a great day! Tomorrow we are planning to take the kids to the Festival of Sail to see the Tall Ships in the San DIego Bay. We are planning to take the ferry to Coronado island. I will be sure to take pics and post some.
My Little Bozo
I think we have a pretty close match here! Only my little bozo is much more cute! That's pasta primavera on her face and her hair already looked like that on one side, so I just stuck the other side out :)
My Magic Wand
Well, today is one of those days where I am thankful to have my wonderful yummy vanilla iced coffees. Kaylee has therapy in a bit, her first OT session. We will also get the results of her OT eval. Ethan had to be in school at the usual time today and picked up at the usual time of 1PM. We have therapy across town from 11:30-12:30 and Javi gets out of school at 12:55. Time to do my magic and be in three places at once!!
*POOF*
My original plan was to pick up Ethan early at 11:00, then jet to Kaylee's appointment across town, then jet across town again. I realized quickly that wasn't going to work after my conversation with Javi's aide. She said we were going to have to figure something else out for Javi because it was just too overwhelming for him to wait at the curb. I had blogged the traffic congestion in my other post at Javi's school. The curb waiting is just not working out for him. Javi had a meltdown, which I could see from the other side of parking lot, being powerless to stop it. He really wants to dart to my car once he sees me, but they have such a procedure for pick up, he has to wait 15-20 minutes for me to get to the front of the loop. Mind you, I have been leaving 20-30 minutes before school dismissal at 2:35 and not actually being able to pick him up until 2:50. I have tried parking and walking in, arriving 30 minutes early, arriving only 20 min early to see if a little later would make any difference. So far, the only right way to do it is to arrive 30 minutes early and park 4-5 blocks away from the school and huff it in with the kids. For Kay and Ethan, that is there nap time, so they are not to happy to be awakened from their car slumber to be moved to a stroller. Either way it's difficult. I either have two screaming kids or one melting down.
The aide was just too overwhelmed by Javi's meltdown, so she said, "Well, this just isn't working for Javi. It's too much for him to wait at the curb. We are going to have to try something else tomorrow. Why don't you try getting here earlier?" I said, "I am already leaving 20-30 minutes before school dismissal. How much earlier should I get here?". She said, "Well, I realize that you have two little ones, but I think you are going to have to park and pick him up in the office from now on because this is too much for him.". She went on to say that I needed to plan ahead and write in the log who would be picking him up and where to meet. Well, so far, I have been the only one picking him up in the afternoon, so I am not sure what prompted that.
It irritated me a little that she seemed so flustered by Javi's behavior, being that she is an aide in his class. It really makes me question whether or not she can handle Javi's needs while staying supportive and calm. It is after all, only the first week and he has had a couple of questionable entries in the comm log that comes home with him. We are going to really evaluate the situation over the next couple weeks to figure out if this is the right placement for him.
Heh, ok, back to my plan for today. Since I realize I can't be all those places, I enlisted the help of Javi's dad. We are going to meet at the park after he picks Javi up from school, so we can chit chat and let the kids play after a long week of school. Hey, kids need time to decompress too. Since I can't be there to go to Kay's OT appointment, pick up Ethan and arrive 30 minutes early to pick Javi up, that was our only real solution. Thank goodness this is Kaylee's only session at 11:30, after that, it gets moved to 9:30.
Happy Friday!!
*POOF*
My original plan was to pick up Ethan early at 11:00, then jet to Kaylee's appointment across town, then jet across town again. I realized quickly that wasn't going to work after my conversation with Javi's aide. She said we were going to have to figure something else out for Javi because it was just too overwhelming for him to wait at the curb. I had blogged the traffic congestion in my other post at Javi's school. The curb waiting is just not working out for him. Javi had a meltdown, which I could see from the other side of parking lot, being powerless to stop it. He really wants to dart to my car once he sees me, but they have such a procedure for pick up, he has to wait 15-20 minutes for me to get to the front of the loop. Mind you, I have been leaving 20-30 minutes before school dismissal at 2:35 and not actually being able to pick him up until 2:50. I have tried parking and walking in, arriving 30 minutes early, arriving only 20 min early to see if a little later would make any difference. So far, the only right way to do it is to arrive 30 minutes early and park 4-5 blocks away from the school and huff it in with the kids. For Kay and Ethan, that is there nap time, so they are not to happy to be awakened from their car slumber to be moved to a stroller. Either way it's difficult. I either have two screaming kids or one melting down.
The aide was just too overwhelmed by Javi's meltdown, so she said, "Well, this just isn't working for Javi. It's too much for him to wait at the curb. We are going to have to try something else tomorrow. Why don't you try getting here earlier?" I said, "I am already leaving 20-30 minutes before school dismissal. How much earlier should I get here?". She said, "Well, I realize that you have two little ones, but I think you are going to have to park and pick him up in the office from now on because this is too much for him.". She went on to say that I needed to plan ahead and write in the log who would be picking him up and where to meet. Well, so far, I have been the only one picking him up in the afternoon, so I am not sure what prompted that.
It irritated me a little that she seemed so flustered by Javi's behavior, being that she is an aide in his class. It really makes me question whether or not she can handle Javi's needs while staying supportive and calm. It is after all, only the first week and he has had a couple of questionable entries in the comm log that comes home with him. We are going to really evaluate the situation over the next couple weeks to figure out if this is the right placement for him.
Heh, ok, back to my plan for today. Since I realize I can't be all those places, I enlisted the help of Javi's dad. We are going to meet at the park after he picks Javi up from school, so we can chit chat and let the kids play after a long week of school. Hey, kids need time to decompress too. Since I can't be there to go to Kay's OT appointment, pick up Ethan and arrive 30 minutes early to pick Javi up, that was our only real solution. Thank goodness this is Kaylee's only session at 11:30, after that, it gets moved to 9:30.
Happy Friday!!
Tuesday, August 19, 2008
Kids' First Day
Kaylee had a great work out at PT. Ms. Bonnie gave us the results of her eval. She was in the 16th percentile for stationary play skills (sitting, kneeling, rotating her trunk, etc) which translates to a typical 9 month old skill level. She was in the 5th percentile for mobility which translates to a 7 month old skill level. Nothing all that surprising.
She was happy that she had made progress since we last saw her. She wants to keep an eye on the position of her feet when she walks to see if she needs orthopedics. She wants to wait until she is walking to really make a judgement call. We have some exercises to work on until we see her next week. Kaylee did very well for her first day, and it was during her regular nap time!! I am so proud of her. She only got a 30 minute power nap before our appointment, so she did really well considering her naps are usually two hours.
Kaylee also hit another milestone today! She clapped for the very first time.
Ethan had a great day. In his teacher, Ms. Danielle's words "Ethan had a FANTASTIC day!! He did so well. He had no trouble adjusting to the new class, new friends and new routine. I just LOVE him and I am so happy he is in my class!!" If that doesn't make a mother feel good, I don't know what would!! Guess I'm doing something right. Ok, so Ethan gets most of the credit. He is just naturally a wonderful little boy.
Javi had a great day too. There were some complications with his drop off and pick up, since the traffic at Javi's school is a complete nightmare. There is only one way in and out of the neighborhood where his school is. To complicate the traffic even more, his school is on the top of a really steep hill, so most people drive their kids to and from school. They actually have a 10 page hand book for pedestrian and auto traffic, complete with different maps and procedures for the morning and afternoon. All I could think of was Mr. Mom! You are doing it wrong!! It's north to drop off, south to pick up a-hole!!! I actually walked the wrong way too, although I had another mom say, ah you are doing fine for the first day :) I ended up parking my car three blocks from the school and walking in because the pick up loop wasn't moving. I had to drag the sleepy little ones out of the car and huff it in. It took me a total of 45 minutes to pick him up from school. I think it may be easier for him to take the bus! Fortunately, we are eligible for the bus, since it's about two miles from our house.
Javi said "It was such a long day, Mom." He was pretty hungry after school, so we decided to call Nana to meet us at Jack In the Box for a snack. It was Javi's cousin, Analia's first day of preschool, so she came along too. We wanted to celebrate their success today with a little treat. She and Ethan had a good time playing together while we were there. They are so cute together. He says Analia is his girlfriend. Well, they aren't blood related, so that's ok ;) She is from Javi's dad's side of the family.
It was a good day over all for everyone. I am happy that we had a smooth transition in to our new programs :)
Posted a couple new flickr pics too.
She was happy that she had made progress since we last saw her. She wants to keep an eye on the position of her feet when she walks to see if she needs orthopedics. She wants to wait until she is walking to really make a judgement call. We have some exercises to work on until we see her next week. Kaylee did very well for her first day, and it was during her regular nap time!! I am so proud of her. She only got a 30 minute power nap before our appointment, so she did really well considering her naps are usually two hours.
Kaylee also hit another milestone today! She clapped for the very first time.
Ethan had a great day. In his teacher, Ms. Danielle's words "Ethan had a FANTASTIC day!! He did so well. He had no trouble adjusting to the new class, new friends and new routine. I just LOVE him and I am so happy he is in my class!!" If that doesn't make a mother feel good, I don't know what would!! Guess I'm doing something right. Ok, so Ethan gets most of the credit. He is just naturally a wonderful little boy.
Javi had a great day too. There were some complications with his drop off and pick up, since the traffic at Javi's school is a complete nightmare. There is only one way in and out of the neighborhood where his school is. To complicate the traffic even more, his school is on the top of a really steep hill, so most people drive their kids to and from school. They actually have a 10 page hand book for pedestrian and auto traffic, complete with different maps and procedures for the morning and afternoon. All I could think of was Mr. Mom! You are doing it wrong!! It's north to drop off, south to pick up a-hole!!! I actually walked the wrong way too, although I had another mom say, ah you are doing fine for the first day :) I ended up parking my car three blocks from the school and walking in because the pick up loop wasn't moving. I had to drag the sleepy little ones out of the car and huff it in. It took me a total of 45 minutes to pick him up from school. I think it may be easier for him to take the bus! Fortunately, we are eligible for the bus, since it's about two miles from our house.
Javi said "It was such a long day, Mom." He was pretty hungry after school, so we decided to call Nana to meet us at Jack In the Box for a snack. It was Javi's cousin, Analia's first day of preschool, so she came along too. We wanted to celebrate their success today with a little treat. She and Ethan had a good time playing together while we were there. They are so cute together. He says Analia is his girlfriend. Well, they aren't blood related, so that's ok ;) She is from Javi's dad's side of the family.
It was a good day over all for everyone. I am happy that we had a smooth transition in to our new programs :)
Posted a couple new flickr pics too.
Monday, August 18, 2008
Back to School for Everyone!
Well, tomorrow is back to school for everyone, including Kaylee! Tomorrow will be Kaylee's first PT session and Friday will be her first OT session.
We went to our orientation at Ethan's preschool today. We got to meet with his new teacher, Ms. Danielle. She is lovely. I have heard so many great things about her. I know I have mentioned it before, but Ethan will be starting at a new school in the integrated program, which is a mainstreamed preschool where there are half typical peers and the other half are kids with high-functioning Autism. Their classroom is set up so cute and the teacher seems like she is really well organized. She really put a lot of effort in to all the letterhead, forms and take home folders. You can definitely tell that she has experience with teaching this program. We decorated Ethan's cubby bucket pictured below. He chose the Scooby Doo theme and I decorated it. We just happened to find the "eye" stickers in the halloween section at the craft store and it reminded me of the Scooby Doo intro.
Javi is also starting a new program and a new school. He will be in NSH (Non-Severely Handicapped), so he will no longer be in the ASD Categorical Program (ASD only class). This is an exciting year for Javi. He will be expected to be more independent, as there is only one assistant teacher and a teacher. There will be no scheduled individual mainstreaming, they will mainstream for certain activities as a whole class, which the expectation is he will gain more independent skill. I am hoping that he will enjoy his new school. He is getting to be such a big boy! So independent!
Fall is almost here! My favorite time of year!
We went to our orientation at Ethan's preschool today. We got to meet with his new teacher, Ms. Danielle. She is lovely. I have heard so many great things about her. I know I have mentioned it before, but Ethan will be starting at a new school in the integrated program, which is a mainstreamed preschool where there are half typical peers and the other half are kids with high-functioning Autism. Their classroom is set up so cute and the teacher seems like she is really well organized. She really put a lot of effort in to all the letterhead, forms and take home folders. You can definitely tell that she has experience with teaching this program. We decorated Ethan's cubby bucket pictured below. He chose the Scooby Doo theme and I decorated it. We just happened to find the "eye" stickers in the halloween section at the craft store and it reminded me of the Scooby Doo intro.
Javi is also starting a new program and a new school. He will be in NSH (Non-Severely Handicapped), so he will no longer be in the ASD Categorical Program (ASD only class). This is an exciting year for Javi. He will be expected to be more independent, as there is only one assistant teacher and a teacher. There will be no scheduled individual mainstreaming, they will mainstream for certain activities as a whole class, which the expectation is he will gain more independent skill. I am hoping that he will enjoy his new school. He is getting to be such a big boy! So independent!
Fall is almost here! My favorite time of year!
Sunday, August 17, 2008
An Investment in Marriage
It's so easy for parents of children with special needs to get sucked in to everyday life and not make special time for your special someone. Just making it through each day with your sanity seems like a big feat sometimes. We spend our days coping instead of celebrating the very reasons we married in the first place. As told in a post, by a new IS friend, most marriages of children with special needs don't make it. We ,like Shawna and Don are doing our best not to become one of the statistics. Shawna's post is a must read. It really hits the nail on the head with what most SN parents go through. Also, check out their site if you have a chance. There is a lot of great info posted there.
I can't say enough how important it is to make time for each other. Mark and I try to live by simple common sense rules that most married people try to live by. Most are just common sense, but sometimes it's tough to remember these things:
1. Only one person is allowed to go crazy at a time. This one is a tough one, but we try to take turns. If the other obviously can't hold it together, we try our best to have one of us be rational at all times. Usually that's Mark ;)
2. Do sweet things for each other when the other is having a bad day. Most things you can do don't cost any money and mean so much to the other person. "Honey, why don't you sleep in today, you've had a rough week.", "Why don't you leave the kids here and go run that errand alone?", "I could tell you were having a hard day, why don't I cook/pick something up and we can talk about it over dinner.", "I was out by your favorite coffee house, so I thought I'd grab you a latte.", "I picked up your favorite ____ at the store today. I know how much you love them." (Eh hem, yep, sometimes my sweetie needs a reminder)
3. Be a good listener. Realize that the person doesn't always want you to fix things or make suggestions how to do things in a more efficient way. Sometimes they just want you to hear what they are saying and understand them.
(Mark is a great listener. I really feel like he hears and understands what I'm saying. It's one of the things I love most about him. He knows when I want him to be Mr. Fix It and when to be a shoulder for me to cry on. What I like best, is when he will listen to me rant all night, then a day or two later when I am feeling more rational he will present me with a solution.)
4. Try your best not to take things out on your spouse. I know this one is difficult, especially for parents with kids with special needs. It's convenient to blow up at the person that is closest to you. In those times when you do, always be the first to apologize.
5. If you are wrong, and you know you are, admit it. Nothing will help grow your relationship and you as a person more than accepting responsibility for your actions. Every couple fights, but try to be the bigger person, hug and make up.
6. Never discuss important/tense issues or argue in front of your children. Even children that do not cognitively understand what you are saying can be effected by it. Negative energy leads to more negative energy, so keep things to positive commentary as much as possible in front of the kids. Of course everyone will bicker about who left the toilet seat up or who left the dirty dish on the counter, but I think you know what I mean ;)
7. Laugh together every day. There is a sunny side to everything. We find that humor gets us through the tough times. If you don't have a sense of humor, watch funny movies together, forward funny emails, point out a funny commercial. You can always point out something you find funny that will probably make your spouse laugh to.
8. Send each other sweet cards, text messages, emails, notes, phone calls, etc. It's nice to let the other person know you are thinking of them and care about them. Everyone needs to be reminded that we are loved.
9. Celebrate each child separately once in a while. It's not always possible to hire a baby sitter to take another child out, but have special days that the activities are geared towards that particular child. Especially if the other child or children are typical. They need to know they are just as special too. Seeing our children's happiness always gives us more motivation to be loving to each other.
10. The most important one...make time to go out alone as much as you possibly can. Whether it's once a week, once a month, just do it! Try to make it a rule not to discuss the children while you are out. Talk about art, talk about books, talk about anything, BUT the kids! You had something to talk about before you had children, otherwise you would have never had any! If you find it difficult to get on a topic. Talk about the days before you had kids, you will most likely find warm memories to reminisce.
Love and big hugs,
Shanna
I can't say enough how important it is to make time for each other. Mark and I try to live by simple common sense rules that most married people try to live by. Most are just common sense, but sometimes it's tough to remember these things:
1. Only one person is allowed to go crazy at a time. This one is a tough one, but we try to take turns. If the other obviously can't hold it together, we try our best to have one of us be rational at all times. Usually that's Mark ;)
2. Do sweet things for each other when the other is having a bad day. Most things you can do don't cost any money and mean so much to the other person. "Honey, why don't you sleep in today, you've had a rough week.", "Why don't you leave the kids here and go run that errand alone?", "I could tell you were having a hard day, why don't I cook/pick something up and we can talk about it over dinner.", "I was out by your favorite coffee house, so I thought I'd grab you a latte.", "I picked up your favorite ____ at the store today. I know how much you love them." (Eh hem, yep, sometimes my sweetie needs a reminder)
3. Be a good listener. Realize that the person doesn't always want you to fix things or make suggestions how to do things in a more efficient way. Sometimes they just want you to hear what they are saying and understand them.
(Mark is a great listener. I really feel like he hears and understands what I'm saying. It's one of the things I love most about him. He knows when I want him to be Mr. Fix It and when to be a shoulder for me to cry on. What I like best, is when he will listen to me rant all night, then a day or two later when I am feeling more rational he will present me with a solution.)
4. Try your best not to take things out on your spouse. I know this one is difficult, especially for parents with kids with special needs. It's convenient to blow up at the person that is closest to you. In those times when you do, always be the first to apologize.
5. If you are wrong, and you know you are, admit it. Nothing will help grow your relationship and you as a person more than accepting responsibility for your actions. Every couple fights, but try to be the bigger person, hug and make up.
6. Never discuss important/tense issues or argue in front of your children. Even children that do not cognitively understand what you are saying can be effected by it. Negative energy leads to more negative energy, so keep things to positive commentary as much as possible in front of the kids. Of course everyone will bicker about who left the toilet seat up or who left the dirty dish on the counter, but I think you know what I mean ;)
7. Laugh together every day. There is a sunny side to everything. We find that humor gets us through the tough times. If you don't have a sense of humor, watch funny movies together, forward funny emails, point out a funny commercial. You can always point out something you find funny that will probably make your spouse laugh to.
8. Send each other sweet cards, text messages, emails, notes, phone calls, etc. It's nice to let the other person know you are thinking of them and care about them. Everyone needs to be reminded that we are loved.
9. Celebrate each child separately once in a while. It's not always possible to hire a baby sitter to take another child out, but have special days that the activities are geared towards that particular child. Especially if the other child or children are typical. They need to know they are just as special too. Seeing our children's happiness always gives us more motivation to be loving to each other.
10. The most important one...make time to go out alone as much as you possibly can. Whether it's once a week, once a month, just do it! Try to make it a rule not to discuss the children while you are out. Talk about art, talk about books, talk about anything, BUT the kids! You had something to talk about before you had children, otherwise you would have never had any! If you find it difficult to get on a topic. Talk about the days before you had kids, you will most likely find warm memories to reminisce.
Love and big hugs,
Shanna
Friday, August 15, 2008
How many babies did you grow?
I didn't want Javi to be left out, as he also does and says cute
things at age 8.
things at age 8.
Today, Javi asked me, while watching an episode of Jon and Kate, Plus
8, "Mom, how many babies did you grow?". I said, "Three." He said,
"Well, I think we need some more babies." To which I said, "I think
you might be sick! Let me feel your forehead.".
Shanna Grimes
(Sent from my iPhone)
Kaylee's First Kiss!
Kay has been puckering up and giving air kisses after we kiss her.
Just a few minutes ago she gave me a real kiss where she puckered up
at the same time! It was so cute.
Just a few minutes ago she gave me a real kiss where she puckered up
at the same time! It was so cute.
Shanna Grimes
(Sent from my iPhone)
His father's son...and weekend agenda
Mom: What are you doing honey?
Ethan: I'm getting ready. (As he is packing up the "trunk" in Kaylee's princess car)
Mom: What are you getting ready for?
Ethan: I'm going to work.
Mom: Are you pretending to be daddy?
Ethan: Yep, I gotta go. See ya later Mommykins! Have a great day! (Then he drives away blowing me kisses from the princess car. Mind you, he is only wearing a t-shirt and underoos, so it was too darn funny)
What makes this even funnier is, it's exactly what Mark says before he walks out the door everyday.
Kids are such a crack up!! LOL
This weekend's agenda:
My friend Carrie is coming over for dinner tonight. We are going to make meatless tacos (she is a vegan and in to the natural stuff too. It's nice to have an ally:) She is way more extreme than us though), beans and rice. We are going to make some fresh salsa with the tomatoes my neighbor grew (they felt guilty that they picked our plums, so they brought us stuff from their garden) and the peppers my uncle grew in their garden. I also made some healthy rice crispy treats for our kids. Recipe below. No hydrogenated oils or high fructose corn syrup!
Tomorrow, I think we will go to the farmer's market and then go on the train park to take a ride. Our usual Saturday :) I had planned to take the boys to go see the new Star Wars cartoon movie, but I thought it would be a nice outing for Ethan and Daddy to do without the girls. What do you think, honey? Then I can get some stuff done around the house. I know our little daddy's boy would love a solo trip to see his favorite geek flick.
Sunday, maybe a picnic at the winery? We haven't been there in a while and I have been craving some wine and cheese. Don't know, maybe we will just bum around the house.
RECIPE FOR PEANUT BUTTER BROWN RICE CRISPY SQUARES:
1tbsp Earth Balace Vegan Shortening
1/3c Agave Nectar (natural sweetener, similar to honey, has a low glycemic index)
1/2c Brown Sugar
1c Natural Peanut Butter
2c Barbara's Puffed Brown Rice Organic Cereal
Heat the shortening, agave nectar and the brown sugar in a large sauce pan over medium heat until all the sugar is melted with out any lumps, stirring constantly. Then add the peanut butter and heat until it melts into a thick, but smooth sauce. Remove from heat. Then pour in about half of the brown rice cereal and stir with a wooden or silicon spoon. When the first lot of cereal is mixed in well, add the rest of the cereal.
Line a 13x9" pan with wax or parchment paper and dump the mixture in. Take another piece of wax or parchment and flatten out the mixture until it covers the pan. Refrigerate for about two hours and then cut with a pizza cutter in to bars. Enjoy!
Thursday, August 14, 2008
Share your lovey
I thought this was the cutest idea. I found this blog through two other IS friends' blogs. If you have a moment please check out their site. They have a Marissa's Bunny, Fairfax a stuffed animal lovey that was given to her by daddy, traveling around promoting awareness about IS.
Kaylee has the "love bug" that was purchased at the hospital and has made two hospital trips and will be making coming with us to our next hospital stay. Our other hospital comfort is the butterfly blankie from Godmama Amber (We love you Ambu and can't hope you are having fun with your family). They have both made the trips more comfortable for Kaylee in the midst of all the pokes, prods, goop, wires and meds.
I think everyone has their hospital ritual. It makes the trip more bearable. I like to get out and take a walk in the CHSD wagons with Kaylee and the boys, when all the beeps and bad new start to become too overwhelming.
What is your child's hospital "lovey" or your family's hospital ritual? Please share pics or comments.
Kaylee has the "love bug" that was purchased at the hospital and has made two hospital trips and will be making coming with us to our next hospital stay. Our other hospital comfort is the butterfly blankie from Godmama Amber (We love you Ambu and can't hope you are having fun with your family). They have both made the trips more comfortable for Kaylee in the midst of all the pokes, prods, goop, wires and meds.
Here's the love bug watching over Kaylee
and the butterfly blankie that keeps her
warm in those drafty hospital gowns.
I think everyone has their hospital ritual. It makes the trip more bearable. I like to get out and take a walk in the CHSD wagons with Kaylee and the boys, when all the beeps and bad new start to become too overwhelming.
Javi, Ethan and Kaylee in one of the CHSD wagons.
This is one of the many courtyards that has grass and
little tykes play stuff. It was nice to take a walk with
kids and pretend we were at the park instead of with
our very sick daughter.
What is your child's hospital "lovey" or your family's hospital ritual? Please share pics or comments.
Wednesday, August 13, 2008
Drug reverses mental retardation caused by genetic disorder
I happened to be browsing about TSC and found this article...
There could be help on the horizon for my kids if they are in fact afflicted by TSC.
Drug reverses mental retardation caused by genetic disorder
Medicine & Health / Medications
UCLA mouse study offers hope for correcting how autism disrupts brain
UCLA researchers discovered that an FDA-approved drug reverses the brain dysfunction inflicted by a genetic disease called tuberous sclerosis complex (TSC). Because half of TSC patients also suffer from autism, the findings offer new hope for addressing learning disorders due to autism. Nature Medicine publishes the findings in its online June 22 edition. more...
There could be help on the horizon for my kids if they are in fact afflicted by TSC.
Drug reverses mental retardation caused by genetic disorder
Medicine & Health / Medications
UCLA mouse study offers hope for correcting how autism disrupts brain
UCLA researchers discovered that an FDA-approved drug reverses the brain dysfunction inflicted by a genetic disease called tuberous sclerosis complex (TSC). Because half of TSC patients also suffer from autism, the findings offer new hope for addressing learning disorders due to autism. Nature Medicine publishes the findings in its online June 22 edition. more...
Tuesday, August 12, 2008
Neuro logic?
Today's appointment was frustrating to say the least. We walked in to a very busy waiting room, so we knew that we were in for a rushed appointment, which is the last thing you want when you wait almost two months for an appointment.
We were seen in a timely fashion, as usual and our doctor was very pleasant as usual. He is a nice doc and has an excellent bedside manner, however, on this particular appointment, I have to question his logic.
I reported that Kaylee has been making some strange new movements, but we haven't seen her make the exact same movements each time that we have noticed. They are similar. She gets a blank stare on her face then kind of holds her hands up. She does this about 4-5 times a month, so it's not all that often. However, she is on Topamax.
We also reported that we were unsure whether or not she was having seizures at night, since she hasn't sleep in our room in months.
We reported her results of her OT and PT evals and the EI's reports. She is currentlyfunctioning at about an 8-9 month level overall. She is going on 13 months now.
He basically told us that because she was making progress he wasn't concerned. I asked why he wasn't concerned, since as of our last appointment she was only about a month or two behind. He said that since cognitively she seemed on track, that he wasn't concerned with the fine and gross motor being off.
He also seemed very fixated on the diagnosis of TSC, even though I had brought up that she doesn't show any other symptoms of TSC. Our family shows some symptoms, but nothing conclusive. She has completed the genetic testing which was also inconclusive.
I challege the diagnosis because I just don't get a strong gut feeling that it's right. My gut has been right so far, so I tend to listen to it.
I am concerned about a 13 month old baby that just began crawling two weeks ago. Kay is not standing on her own or walking. I know that the walking deadline is 18 months, but I'm not going to burry my head in the sand until then. Sorry, I made the mistake of listening to a
doctor tell me my baby was ok once already and Javi turned out to have Autism. Fortunately, Kay already receives a lot of services that Javi missed out on with out a diagnosis, but that is exactly my point, how far behind would she be without them? Would he be more interested in
getting to the root of the problem then?
We are in the works for a repeat vEEG, but I pretty much had to push for a repeat. He increased her meds for the time being.
I know that it may not change the treatment plan, but something tells me something is a miss. I think it's time for a second opinion.
Shanna Grimes
(Sent from my iPhone)
Monday, August 11, 2008
Happy Birthday, Mom!!
We are celebrating the big day by going to a neurology appointment :) Hope all goes well. We will see. No sure when we will have to go in for testing. I'll let you all know later.
We are planning on really celebrating by heading out for seafood. Then we will come back to the house and have cake with the kids.
We are planning on really celebrating by heading out for seafood. Then we will come back to the house and have cake with the kids.
Friday, August 8, 2008
Thursday, August 7, 2008
Pics from the Fleet
There are some cute pics in this lot, so please check 'em out on flickr by clicking on the badge below.
www.flickr.com
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Megamelt while tinkering at the Fleet
We had a pretty good day at the Reuben H Fleet Center. It's San Diego's Museum of Science and Industry. We hadn't been there in a couple of years, so it was fun for a change. We had actually planned to go to the zoo, but my membership had expired and I didn't realize. I didn't want to spring for the $129 renewal at the moment, since we just did Knott's Berry Farm, and it was a really hot day anyway. We decided to go for the bargain-based fun and go to the museum right next to the zoo.
Javi had a pretty big meltdown when we were looking at the last exhibit. This was after three hours of fun at the museum. He didn't have a problem with switching to the science museum at the last minute, which was a relief. It was an aging exhibit that was supposed to age a picture of you to show you what you would look like as you aged, but it wasn't working. It took a considerable amount of time and it failed twice, so Javi just went bizerk. I'm just glad we were getting ready to leave anyway, because I would have had two meltdowns to deal with. I had already prepped Ethan that we were leaving, so it was an easy transition. Of course, everyone was staring as usual when Javi started screaming. I had an elderly lady tell him that he needed to settle down, which of course irritated me and did not help the situation. I didn't feel the need to pull the Autism trump card because I get tired of doing that. I just pulled him aside and tried to work through it, but it wasn't working so we just left. At least he walked back to the car this time. I didn't have to carry him over my shoulder biting, kicking and throwing himself on the ground. We ignored him after the calming techniques didn't work, since attention tends to fuel the meltdown even more. When we got back to the car, which was a long walk, he began the self-mutalating. He picked off a scab which proceeded to bleed everywhere. It's par for the course for one of Javi's megamelts. The meltdowns don't really bother me that much. I know those are more "autistic-like". It's the just plain mean behavior that gets under my skin. This morning he got in trouble for being mean to his brother, got put on a cool down (time out) after screaming at me and then tried to trip me as I came down the stairs. He also lost all privileges on the behavior battery and had to work back from a 0 to a 4 just to get to go today. Yep, that's just a day in the life. Everything is an uphill battle with Javi, and always has been. He makes leaps and strides in some ways, but it's always two steps forward in one area and two steps back in another. It's like playing the stick your finger in the dam game, water always shoots out somewhere else! I keep threatening that Supernanny is going to come and visit us.
Our real life supernanny, our Behavior Mod consultant, should be meeting with us soon. She is our new consultant. I didn't much care for the last one, so I am hoping the new one will be better. This is our second round of bmod. Our first was very intensive bmod, 3 hours, 3 times a week. Honestly, I think we need the intense one again. Right now we are only approved for 1 hour a week.
We are clutching straws, literally, with Javi's sensory needs, which are immense. Javi loves to make "flappy sticks" out of straws and paper. He had vowed he would try to stop flapping when he turned eight, but he's back on the "crack" after only five days without it. We started him on children's yoga on Tuesday and I have been investigating osteotherapy, which I guess is similar to chiropratics? One of the best osteotherapy clinics is right here in SD. I have been checking in to whether or not our insurance will cover it, but I doubt they will. It's a shot in the dark with those neo holistic treatments. They are usually very $$$ and they have no guarantees. It's just so unfair that insurance doesn't cover his needs. The school district, which we live in one of the best in CA for Autism, just can't provide enough service. They give him the minimum and he has improved with many of the services and the classroom time. I know that there is only so much they can do for him. In Javi's case, the OT isn't really working all that well for him anymore. We utilize all the techniques at home, but they only work in short bursts. We have tried the diet in the past, but it wasn't really making enough of a difference to go through all the extra work.
Sometimes I could just scream, thinking of all that happens in this house in a day (and sometimes do). I feel like I put out one fire and another one starts burning. I try to think positively and just take it one day at a time, but man, it's hard. It's a difficult life to have multiple special needs kids. It's so rewarding when things come together, which really makes me appreciate the good times.
I think the most difficult part of being an SN parent is maintaining your sense of self. Reminding yourself, that you weren't put on this planet for the sole purpose of caring for your children. It seems funny to put it that way because that is what we are here for, to prolong our species ;) I think everyone knows what I mean though!!
Ahhh...I feel better. I think I tend to sensor my blogging because we have a lot of family members that read this blog and I don't like them to worry. I really need to just learn to lay my cards on the table. As Mark says, you never know who else you may reach out in the cosmos who will read this and feel like they aren't the only one. So yeah, I'm not super mom, but I do play one on TV.
Javi had a pretty big meltdown when we were looking at the last exhibit. This was after three hours of fun at the museum. He didn't have a problem with switching to the science museum at the last minute, which was a relief. It was an aging exhibit that was supposed to age a picture of you to show you what you would look like as you aged, but it wasn't working. It took a considerable amount of time and it failed twice, so Javi just went bizerk. I'm just glad we were getting ready to leave anyway, because I would have had two meltdowns to deal with. I had already prepped Ethan that we were leaving, so it was an easy transition. Of course, everyone was staring as usual when Javi started screaming. I had an elderly lady tell him that he needed to settle down, which of course irritated me and did not help the situation. I didn't feel the need to pull the Autism trump card because I get tired of doing that. I just pulled him aside and tried to work through it, but it wasn't working so we just left. At least he walked back to the car this time. I didn't have to carry him over my shoulder biting, kicking and throwing himself on the ground. We ignored him after the calming techniques didn't work, since attention tends to fuel the meltdown even more. When we got back to the car, which was a long walk, he began the self-mutalating. He picked off a scab which proceeded to bleed everywhere. It's par for the course for one of Javi's megamelts. The meltdowns don't really bother me that much. I know those are more "autistic-like". It's the just plain mean behavior that gets under my skin. This morning he got in trouble for being mean to his brother, got put on a cool down (time out) after screaming at me and then tried to trip me as I came down the stairs. He also lost all privileges on the behavior battery and had to work back from a 0 to a 4 just to get to go today. Yep, that's just a day in the life. Everything is an uphill battle with Javi, and always has been. He makes leaps and strides in some ways, but it's always two steps forward in one area and two steps back in another. It's like playing the stick your finger in the dam game, water always shoots out somewhere else! I keep threatening that Supernanny is going to come and visit us.
Our real life supernanny, our Behavior Mod consultant, should be meeting with us soon. She is our new consultant. I didn't much care for the last one, so I am hoping the new one will be better. This is our second round of bmod. Our first was very intensive bmod, 3 hours, 3 times a week. Honestly, I think we need the intense one again. Right now we are only approved for 1 hour a week.
We are clutching straws, literally, with Javi's sensory needs, which are immense. Javi loves to make "flappy sticks" out of straws and paper. He had vowed he would try to stop flapping when he turned eight, but he's back on the "crack" after only five days without it. We started him on children's yoga on Tuesday and I have been investigating osteotherapy, which I guess is similar to chiropratics? One of the best osteotherapy clinics is right here in SD. I have been checking in to whether or not our insurance will cover it, but I doubt they will. It's a shot in the dark with those neo holistic treatments. They are usually very $$$ and they have no guarantees. It's just so unfair that insurance doesn't cover his needs. The school district, which we live in one of the best in CA for Autism, just can't provide enough service. They give him the minimum and he has improved with many of the services and the classroom time. I know that there is only so much they can do for him. In Javi's case, the OT isn't really working all that well for him anymore. We utilize all the techniques at home, but they only work in short bursts. We have tried the diet in the past, but it wasn't really making enough of a difference to go through all the extra work.
Sometimes I could just scream, thinking of all that happens in this house in a day (and sometimes do). I feel like I put out one fire and another one starts burning. I try to think positively and just take it one day at a time, but man, it's hard. It's a difficult life to have multiple special needs kids. It's so rewarding when things come together, which really makes me appreciate the good times.
I think the most difficult part of being an SN parent is maintaining your sense of self. Reminding yourself, that you weren't put on this planet for the sole purpose of caring for your children. It seems funny to put it that way because that is what we are here for, to prolong our species ;) I think everyone knows what I mean though!!
Ahhh...I feel better. I think I tend to sensor my blogging because we have a lot of family members that read this blog and I don't like them to worry. I really need to just learn to lay my cards on the table. As Mark says, you never know who else you may reach out in the cosmos who will read this and feel like they aren't the only one. So yeah, I'm not super mom, but I do play one on TV.
Wednesday, August 6, 2008
Monday, August 4, 2008
Honesty is the best policy...
I took all three kids to Target (yes, I am crazy) this afternoon to go and look at three wheeled scooters for Ethan and buy a few odds and ends we were out of at home. I didn't find a scooter for Ethan that we liked, since he really isn't in to SpiderMan and that was the only one the had. I did find a cute big girl car seat for Kay that's pink and has a good safety rating on clearance for $35, so we did pick that up. Anyway, as we were headed out of the Target back to the car, there was an empty space next to "Chin" (that's my car's name according to Javi, he names everything!!) with a wallet lying next to him.
I picked up the wallet knowing it must have been the person that parked next to us. I looked through the wallet to try to find a business card with the name that matched the driver's license with no luck. What I did find was a ton of credit cards, $170 in Euros, and approx $300 in american dollars. That is equivalent to close to $700 in american dollars all in cash! I immediately thought of taking the wallet in to security at Target, but that would also mean that the lady would have to know she lost it at Target, which chances are she wouldn't, plus, no offense to those who work at Target, but on a Target wage, I'm sure they may be tempted to take a dip in to the wallet.
I know the pain and frustration of loosing a wallet and having to cancel credit cards, wait in line at the DMV and be without identification for up to three months. In California, we don't get our new driver's licenses on the spot. They mail them to you and it takes forever!! I have an iPhone with Maps and pseudo GPS built in, so I decided to just map out the address and go and drop off the wallet on the doorstep.
Thinking, well it's on a road I know, it shouldn't be too hard to find. So, off the kids and I went to drop off the wallet. We arrive at the destination, but I am having trouble locating the house or mailbox. We drove up and down the street about three times. I had missed the mailbox because it was missing a number in the address. As it turns out, she lived back in "horseland" in Poway (actually, out where we have been looking in Poway, most of the properties are zoned for horses) at the top of the steepest driveway I have ever seen in my life! I decided to take a stab at driving up because I really wanted to leave it on the doorstep for her to find, and not take a chance leaving it in the mailbox with that much cash in the wallet. When I reached the top of the drive way, there was a security gate with no phone and no doorbell. Since, I couldn't leave the wallet on the door, or turn around in the driveway, my only choice was to back down. UGH!! I have never been so scared in my life to have all three kids in the car and backing down the steepest driveway ever. I thought, well if I can just make it to the neighbor's driveway, I will back in and turn around. I made it to the neighbor's but I couldn't get in the driveway on the first try with my big SUV. I had to pull forward, which I knew probably meant spinning out the tires. Yep, spun out two times, and decided it would just be safer to back down since the second spin out, I nearly rolled in to the brick wall adjacent to the driveway.
No such luck being able to return the wallet, so I decided to leave a note explaining everything with my contact info in the mailbox and went home. Still not being satisfied with that, I decided to look her up in Zabasearch, to see if there was a phone number listed. Luckily, there was, so I proceeded to call her. I did manage to reach her, apparently, she was home when I came by, but with no doorbell, I couldn't ring her at the gate. We arranged for her to come over to pick up the wallet. She, up until that point had no idea that the wallet was missing.
She arrived about 30 minutes later to pick it up with a Thank You note and a bottle of my favorite champagne Wilson Creek Almond Flavored Champagne. As it turned out, we had brought up the fact that I had also lost a wallet with my St. Jude card inside with a great deal of money in it and it was returned to me in tact. She proceeded to tell me a story about how she had lost her husband last year, but before he passed, about six years ago, he had put up a St. Jude statue in the yard with a natural rock altar. They had lost that same home in the Cedar Fire in 2003 where everything had burned down to the foundation and all that was left of their home was the St. Jude with very minimal damage to him. They rebuilt and still have the statue in their yard. It gave me chills when she told me this!!
We spoke for a while, and she hugged me and thanked me once again before leaving. I opened the card and inside was a $20 that simply said Thank you for your honesty and God Bless. I thought that was so sweet. It really wasn't necessary for her to reward me, but it was nice just the same.
I decided to write her a Thank You and mail it to her, since I had her address. Since I couldn't find a phone number in her wallet, I gave her my own St. Jude card out of my wallet with a label that I made under the prayer that read:
Should this wallet be lost, please return to "Mrs. X" Phone "X" God Bless You
Guess I did my good deed for the day :) I'm just glad I could help out. I was also able to teach my kids the importance of honesty and met a very sweet lady in the process.
Ok, we are off to have dinner off her gift of gratitude :)
Sunday, August 3, 2008
New Hobby
I found another hobby I enjoy. A friend of mine asked if I could retouch his acting head shot for his zed card. I had retouched some of my own photos in the past. The last one I worked on was my pregnancy photo last year. I had some unsightly stretch marks to remove, which, by the way, are the badge of a real woman! Hehe, love that movie For Keeps :) Anyway, I really figured out that I enjoyed doing it. The nice part too, I asked him to put my elliptical machine together that I have had for months, but have been putting off constructing. Thought it was a good trade off for retouching the photo. Mark really hates the kind of honey-dos that require manual labor :) Here is the photo. On the left is the retouched photo and the right is the original.
I am not a photoshop guru or anything like Mark's Dad, but I did enjoy working on it. It was much less taxing than designing something from scratch. I like seeing the progression of how much changes when you retouch. I added a softer light by using an overlay mask with gaussian blur, then I highlighted the hair, since the blur washes it out. In the process, it does get rid of a lot of hair wisps. I also changed the hue slightly, whitened the eyes, soften the skin tone and removed and softened lines and redness using the healing brush. I didn't take out every flaw, since I think that a few flaws make the picture look more realistic and adds character.
Guess it's time to watch all those photoshop tutorials, right honey? Mark has been trying to get me the watch them for months. Maybe I can watch them while I am working out on my new elliptical machine!
I am not a photoshop guru or anything like Mark's Dad, but I did enjoy working on it. It was much less taxing than designing something from scratch. I like seeing the progression of how much changes when you retouch. I added a softer light by using an overlay mask with gaussian blur, then I highlighted the hair, since the blur washes it out. In the process, it does get rid of a lot of hair wisps. I also changed the hue slightly, whitened the eyes, soften the skin tone and removed and softened lines and redness using the healing brush. I didn't take out every flaw, since I think that a few flaws make the picture look more realistic and adds character.Guess it's time to watch all those photoshop tutorials, right honey? Mark has been trying to get me the watch them for months. Maybe I can watch them while I am working out on my new elliptical machine!
Saturday, August 2, 2008
Potty Wars, the saga continues
to tell us when he needed to go potty, he undressed himself, sat by
himself, went #2 for the first time in a long time on the potty, got
down and told me, got dressed all by himself, then reminded me he
needed help washing his hands. Hooray for my big boy! We are really on
our way. He wears underwear all day, even during a nap.
He swam at his friends' (Ali and Tyler) house and didn't pee in the
pool. He got out to use the potty.
He still wears a pull up at night, but he doesn't pee at night but, he
has had an occasional morning accident on the carpet. I think next
week we will go to underwear all the time.
"I so prouda you!" -Ethan
"Yes, I am very prouda you, babe" -Mom
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