Saturday, July 10, 2010
What to do on a Saturday
Photo album of the day can be found here:
http://www.flickr.com/photos/56083521@N00/sets/72157624341283343/
Thursday, June 24, 2010
The end of Aquarium Camp
**After reading, please read the letter from the Director of Education at the Aquarium in the comments section**
Well, here's the post I said I wouldn't be making in a while. Its kind of a hard one for me, because I'm going to post an honest review of what happened at the Tennessee Aquarium Camp 2010 with Jake enrolled in the Aquatots program. The Aquarium is a very very important place to us, and we have been members since I was pregnant with Jake, our first membership being bought so that we could preview the Ocean Journey. We get the Family + guest membership which is $155 per year and I don't think we've let it lapse much at all in those 5 years. Jake absolutely ADORES the aquarium and we go there maybe once per month or more, often with more guests than our membership allows. The aquarium has been integral in our homemade therapy sessions to teach Jake appropriate behavior in public. Its the "go-to" place to burn off energy, educate and relax. It will be the same kind of place for Manny as well, and its a safe place for me too.
When filling out the application for the camp, I was pleased to see a section for listing any special needs that the child may have. I assumed that either they were accustomed to having special needs children in camp, or that someone would contact me if they had any questions. No one contacted me, in fact I either didn't receive the packet in the mail with the information or it got misplaced here. I called on Friday morning (yes, I should have called sooner) to try to get some information (like where to drop Jake off) and to speak to the education coordinator about his special needs, but my call wasn't returned until Monday when I'd already dropped him off.
The Aquatots program is for ages 4 to 5 years (must be potty trained). For some kids this camp may be the first time they've ever been away from their parents, and I witnessed a meltdown by a little girl who didn't want to stay. Her mom said it was her first time, and she was fine later. I had butterflies with razor blade wings in my stomach. I attempted to explain to the counselor that Jake was autistic, and really didn't get much said, it was a flurry of activity and there were kids and parents everywhere. I left and barely had the ability to save my tears for the car. I just hoped he made it through the day... I'd just dropped my little boy off at CAMP. A year ago I would have said "No way, there's no way Jake could make it through even a moment of camp."
The first day of pickup (I still wasn't sure of the drop-off pick-up protocol because I didn't have a packet or parking pass) I walked up and was told "Ehh.. *shrug* he did pretty good. He won't sit for crafts."
Tuesday pick-up I was told "Wellll.... I guess he did better than yesterday. I just have to stay with him all of the time. He really doesn't like crafts."
Wednesday pickup went better, one of the counselors smiled and put Jake into his seat while the other gave me the sign-out paper. I asked how he did and got another "Oh, he did pretty well, I guess." I said "You know, he really wanted to do this, and he tries hard." This was met with absolutely no response at all or a small grunt, I'm not sure. I was sad. Was he having fun at all? Did he smile or laugh or like anything? Did they just hate me for bringing him? That uneasy feeling wouldn't go away. Ugh, I never know if I'm doing the right thing! Meanwhile Jake still said he wanted to go to Aquarium "school" and only got a tiny bit apprehensive when he was dropped off (for Jake anyway).
Today Granny took Jake to school and Steve got a call around 10something from one of the counselors. She said that Jake needed to be picked up, that he had yanked a little girl's hair and "besides, we're about to do crafts and we're using dirt, and I'm afraid that he might eat dirt and get sick or something."
As far as I know Jake doesn't generally eat dirt (Manny does). Steve said that he completely shut down after that comment and just wanted off of the phone. Why is that statement offensive to the parent of a child with special needs (who, as far as we know, doesn't have dirt-eating tendencies)? It kind of comes across as "Well, he might eat dirt.. cause well, I've heard that some retards eat dirt." Maybe that's a little oversensitive, but oh well, its been an emotional week. The comment was repeated to Steve's dad.
Granny and Pops and Zachary were actually still AT the aquarium, so they were able to join up with Jake instantly. For all of those who have asked (thank you for loving my kid), Jake isn't really aware of what was going on, and is not upset at all by the outcome. He was probably just glad he didn't have to do crafts.
I called the education coordinator and we had a long talk. She was wonderfully courteous to me and spent a long time on the phone with me. I gave her all of my constructive criticism, saying that it was misleading to have a section in the application asking about special needs if nobody read that section or attempted to address any concerns. I thought it might be appropriate (assuming your program accepts special needs kids) to contact parents who wrote in the application that the child had special needs and find out what was going on. I would have been happy to send Jake for only half of the time of camp, maybe pick him up before crafts, if that was what needed to happen for him to be able to have a positive experience, HAD I GOTTEN ANY COMMUNICATION AT ALL. She said that they had had a discussion about Jake the day before. Really? Because... I'm his mama, I'm always having discussions/IEP meetings and the like so that I can work with his educators to make sure that everybody gets what they need out of a particular situation. I can give you ALL sorts of wonderful ideas about how to make this better for everyone, even if that means picking Jake up every day after only an hour of camp. I told her that I had basically been making big shark-like circles around the aquarium for 3 and a half hours anticipating the call EVERY morning, and wouldn't have been the least bit surprised or upset should I have had to pick him up early. I would have ADORED to have been a part of ANY discussion that they had about my son.
I also talked to her a bit about the counselors attitudes. This prompted a call from one of the counselors. These gals are teenagers/college students, and this particular counselor said that she is going into education with a focus on special needs kids. I told her pretty much everything that I had told the education coordinator. I explained what a big deal that this was for everybody concerned, and that a mama like me could use some positive reassurance just every once in a while. She seemed to also be frustrated that there was no communication whatsoever and if she she had been more prepared, she felt she could have done her job more effectively. She said that she only gets the papers with the information on each child every Thursday and camp is still going on. Maybe someone positioned above the counselors should read those papers BEFORE the young ladies taking care of the children? I commended her for doing an awesome job spending her entire summer with classes of 18 crazy 4 and 5 year olds. I wanted her to know that I didn't blame the counselors, I just want someone to talk to me about apparent problems before it ends with it becoming a disciplinary issue. If he's too much trouble for you to handle, just tell me, we can work it out. Maybe some changes need to be made should the aquarium continue to include special needs children in their summer camps.
I broke down in tears with both ladies, I don't think I've ever cried so much in front of strangers as I do now. I'm really sick of that, BTW. I gave them the example of Toy Story 3: Jake has been DYING to see this movie, we've watched previews, he's been drawing the logo, and the other day I took him to a matinee, his first movie theater experience. I had two choices: 1) I could say "I paid $20 for this, and we're gonna watch the whole thing." or 2) "We're gonna see as much of this movie as we can, its Jake's treat, Jake can decide." After the previews Jake asked to go home. He accepted a potty break as an alternative and I left his backpack inside the theater because I knew he'd be too OCD to leave it behind. That got him back into the theater just in time to see Buzz and Woody on the screen. My baby sat for an entire 45 minutes of the movie. I pushed him to the brink, bribing him and asking him to sit back down, to sit in my lap until he had had enough and was on the verge of a meltdown. I went home satisfied that we got through exactly 1 hour more than I had expected (he could have bolted at the door the second he saw the screen). I opted to take what we could get, and so I was really happy with the result. I would do the same thing for Aquarium Camp.
Jake has been invited back to camp tomorrow, maybe to be picked up before crafts. I told the counselor that honestly I didn't think I was emotionally prepared for that. If something else happened I'd probably fall out.
Hopefully everything will go smoother if Jake decides he wants to do "Aquarium school" next year. Everyone was extremely cooperative and nice to me today. I just don't think they were prepared. Another mom said that its possible that few parents with kids like Jake have the balls to enroll them in such an ambitious activity. I still don't really know if he enjoyed it or not except that he actually WENT with the counselors the second third and fourth day.. which is a gigantic step for him.
Jake has a little plastic frog that he got from camp the first day, I think. Today he told his dad a whole list of things about his frog, like what it eats and where it lives. He talks about "Meggy" the counselor a little bit. It may not always seem like anything is getting through, and teaching him is far from instant gratification, but its worth it, I promise.
Well, here's the post I said I wouldn't be making in a while. Its kind of a hard one for me, because I'm going to post an honest review of what happened at the Tennessee Aquarium Camp 2010 with Jake enrolled in the Aquatots program. The Aquarium is a very very important place to us, and we have been members since I was pregnant with Jake, our first membership being bought so that we could preview the Ocean Journey. We get the Family + guest membership which is $155 per year and I don't think we've let it lapse much at all in those 5 years. Jake absolutely ADORES the aquarium and we go there maybe once per month or more, often with more guests than our membership allows. The aquarium has been integral in our homemade therapy sessions to teach Jake appropriate behavior in public. Its the "go-to" place to burn off energy, educate and relax. It will be the same kind of place for Manny as well, and its a safe place for me too.
When filling out the application for the camp, I was pleased to see a section for listing any special needs that the child may have. I assumed that either they were accustomed to having special needs children in camp, or that someone would contact me if they had any questions. No one contacted me, in fact I either didn't receive the packet in the mail with the information or it got misplaced here. I called on Friday morning (yes, I should have called sooner) to try to get some information (like where to drop Jake off) and to speak to the education coordinator about his special needs, but my call wasn't returned until Monday when I'd already dropped him off.
The Aquatots program is for ages 4 to 5 years (must be potty trained). For some kids this camp may be the first time they've ever been away from their parents, and I witnessed a meltdown by a little girl who didn't want to stay. Her mom said it was her first time, and she was fine later. I had butterflies with razor blade wings in my stomach. I attempted to explain to the counselor that Jake was autistic, and really didn't get much said, it was a flurry of activity and there were kids and parents everywhere. I left and barely had the ability to save my tears for the car. I just hoped he made it through the day... I'd just dropped my little boy off at CAMP. A year ago I would have said "No way, there's no way Jake could make it through even a moment of camp."
The first day of pickup (I still wasn't sure of the drop-off pick-up protocol because I didn't have a packet or parking pass) I walked up and was told "Ehh.. *shrug* he did pretty good. He won't sit for crafts."
Tuesday pick-up I was told "Wellll.... I guess he did better than yesterday. I just have to stay with him all of the time. He really doesn't like crafts."
Wednesday pickup went better, one of the counselors smiled and put Jake into his seat while the other gave me the sign-out paper. I asked how he did and got another "Oh, he did pretty well, I guess." I said "You know, he really wanted to do this, and he tries hard." This was met with absolutely no response at all or a small grunt, I'm not sure. I was sad. Was he having fun at all? Did he smile or laugh or like anything? Did they just hate me for bringing him? That uneasy feeling wouldn't go away. Ugh, I never know if I'm doing the right thing! Meanwhile Jake still said he wanted to go to Aquarium "school" and only got a tiny bit apprehensive when he was dropped off (for Jake anyway).
Today Granny took Jake to school and Steve got a call around 10something from one of the counselors. She said that Jake needed to be picked up, that he had yanked a little girl's hair and "besides, we're about to do crafts and we're using dirt, and I'm afraid that he might eat dirt and get sick or something."
As far as I know Jake doesn't generally eat dirt (Manny does). Steve said that he completely shut down after that comment and just wanted off of the phone. Why is that statement offensive to the parent of a child with special needs (who, as far as we know, doesn't have dirt-eating tendencies)? It kind of comes across as "Well, he might eat dirt.. cause well, I've heard that some retards eat dirt." Maybe that's a little oversensitive, but oh well, its been an emotional week. The comment was repeated to Steve's dad.
Granny and Pops and Zachary were actually still AT the aquarium, so they were able to join up with Jake instantly. For all of those who have asked (thank you for loving my kid), Jake isn't really aware of what was going on, and is not upset at all by the outcome. He was probably just glad he didn't have to do crafts.
I called the education coordinator and we had a long talk. She was wonderfully courteous to me and spent a long time on the phone with me. I gave her all of my constructive criticism, saying that it was misleading to have a section in the application asking about special needs if nobody read that section or attempted to address any concerns. I thought it might be appropriate (assuming your program accepts special needs kids) to contact parents who wrote in the application that the child had special needs and find out what was going on. I would have been happy to send Jake for only half of the time of camp, maybe pick him up before crafts, if that was what needed to happen for him to be able to have a positive experience, HAD I GOTTEN ANY COMMUNICATION AT ALL. She said that they had had a discussion about Jake the day before. Really? Because... I'm his mama, I'm always having discussions/IEP meetings and the like so that I can work with his educators to make sure that everybody gets what they need out of a particular situation. I can give you ALL sorts of wonderful ideas about how to make this better for everyone, even if that means picking Jake up every day after only an hour of camp. I told her that I had basically been making big shark-like circles around the aquarium for 3 and a half hours anticipating the call EVERY morning, and wouldn't have been the least bit surprised or upset should I have had to pick him up early. I would have ADORED to have been a part of ANY discussion that they had about my son.
I also talked to her a bit about the counselors attitudes. This prompted a call from one of the counselors. These gals are teenagers/college students, and this particular counselor said that she is going into education with a focus on special needs kids. I told her pretty much everything that I had told the education coordinator. I explained what a big deal that this was for everybody concerned, and that a mama like me could use some positive reassurance just every once in a while. She seemed to also be frustrated that there was no communication whatsoever and if she she had been more prepared, she felt she could have done her job more effectively. She said that she only gets the papers with the information on each child every Thursday and camp is still going on. Maybe someone positioned above the counselors should read those papers BEFORE the young ladies taking care of the children? I commended her for doing an awesome job spending her entire summer with classes of 18 crazy 4 and 5 year olds. I wanted her to know that I didn't blame the counselors, I just want someone to talk to me about apparent problems before it ends with it becoming a disciplinary issue. If he's too much trouble for you to handle, just tell me, we can work it out. Maybe some changes need to be made should the aquarium continue to include special needs children in their summer camps.
I broke down in tears with both ladies, I don't think I've ever cried so much in front of strangers as I do now. I'm really sick of that, BTW. I gave them the example of Toy Story 3: Jake has been DYING to see this movie, we've watched previews, he's been drawing the logo, and the other day I took him to a matinee, his first movie theater experience. I had two choices: 1) I could say "I paid $20 for this, and we're gonna watch the whole thing." or 2) "We're gonna see as much of this movie as we can, its Jake's treat, Jake can decide." After the previews Jake asked to go home. He accepted a potty break as an alternative and I left his backpack inside the theater because I knew he'd be too OCD to leave it behind. That got him back into the theater just in time to see Buzz and Woody on the screen. My baby sat for an entire 45 minutes of the movie. I pushed him to the brink, bribing him and asking him to sit back down, to sit in my lap until he had had enough and was on the verge of a meltdown. I went home satisfied that we got through exactly 1 hour more than I had expected (he could have bolted at the door the second he saw the screen). I opted to take what we could get, and so I was really happy with the result. I would do the same thing for Aquarium Camp.
Jake has been invited back to camp tomorrow, maybe to be picked up before crafts. I told the counselor that honestly I didn't think I was emotionally prepared for that. If something else happened I'd probably fall out.
Hopefully everything will go smoother if Jake decides he wants to do "Aquarium school" next year. Everyone was extremely cooperative and nice to me today. I just don't think they were prepared. Another mom said that its possible that few parents with kids like Jake have the balls to enroll them in such an ambitious activity. I still don't really know if he enjoyed it or not except that he actually WENT with the counselors the second third and fourth day.. which is a gigantic step for him.
Jake has a little plastic frog that he got from camp the first day, I think. Today he told his dad a whole list of things about his frog, like what it eats and where it lives. He talks about "Meggy" the counselor a little bit. It may not always seem like anything is getting through, and teaching him is far from instant gratification, but its worth it, I promise.
Tuesday, June 22, 2010
Summer extravaganza.
For those who are asking for updates and wondering if I've "quit my blog"... please understand that its summer. I had NO idea how challenging that this time of the year was going to be. Its a frenzy of not-being-able-to-work, less-not-more childcare and fun-stuff-to-do. I can't keep up at all. Manny has hit the "almost 3year old" stage that seems to be one of the most difficult times for children with autism. He is trapped inside of himself.. and is showing his frustration constantly, and can barely be taken in public for any period of time. He is on a sleep schedule of approx 10-11 PM until 4 or 6 AM.. which is a HUGE improvement. I can't even begin to describe. I feel pity, love and repulsion.. the thoughts that go through my head plague me. My greatest fear is the future. MY GREATEST FEAR IS THE FUTURE.
Jake is going to Aquarium Camp every morning this week, so my normal schedule is turned upside down, even with the (Omg.. are you an angel from heaven?) help of my mother-in-law. The counselers aren't making me feel all that great about dumping my special needs child on them (maybe its just my perception, but they have NOTHING positive to say) but he deserves camp, he's worked VERY hard to learn to act as appropriately as he can so that he can do these things. Whew.. two days down.. three to go...
I don't talk about my children a lot on facebook.. I post about all of the crazy stuff and partying that we do, but I do post pictures and videos of our adventures, so join me there if you can. Again, I'm just completely not prepared for this time in my life, and I can't even begin to write and blog about it right now. If you are truly curious, and a member of my family or a friend within driving distance, just call and come by the house, plan us a camping trip, or give me a call to chat. I'll give you an earful, but I'm toning down the "in real life" dialoge about my children and what's going on with them. I'm learning that that will polarize people, and its lonely enough already sometimes.
The Thingamifling was a success. If you were there, I hope you had a good time.. if you weren't you missed a good time.
Goodnight, and don't expect a lot of updates until something medical happens.
Jake is going to Aquarium Camp every morning this week, so my normal schedule is turned upside down, even with the (Omg.. are you an angel from heaven?) help of my mother-in-law. The counselers aren't making me feel all that great about dumping my special needs child on them (maybe its just my perception, but they have NOTHING positive to say) but he deserves camp, he's worked VERY hard to learn to act as appropriately as he can so that he can do these things. Whew.. two days down.. three to go...
I don't talk about my children a lot on facebook.. I post about all of the crazy stuff and partying that we do, but I do post pictures and videos of our adventures, so join me there if you can. Again, I'm just completely not prepared for this time in my life, and I can't even begin to write and blog about it right now. If you are truly curious, and a member of my family or a friend within driving distance, just call and come by the house, plan us a camping trip, or give me a call to chat. I'll give you an earful, but I'm toning down the "in real life" dialoge about my children and what's going on with them. I'm learning that that will polarize people, and its lonely enough already sometimes.
The Thingamifling was a success. If you were there, I hope you had a good time.. if you weren't you missed a good time.
Goodnight, and don't expect a lot of updates until something medical happens.
Monday, May 24, 2010
Summer vacation and Planning for next school year.
This weekend we had a wonderful treat. Kevin and Arianne, Donovan and Ethan came up to our house on Friday night, then we all left and went camping at Cloudland Canyon State Park on Saturday night. Much much fun was had.. it was Donovan and Ethan's first camping trip and they did AMAZING. We never have a bad time when we hang out with that bunch. We love you guys, thanks for being our friends.
Here's pics: http://www.flickr.com/photos/56083521@N00/sets/72157624121298620/
Manny is getting a little easier to take on these types of trips, although he's still exhausting and takes constant supervision because he wants nothing more than to escape and run down the street. Still, he has started to respond to us a little bit when we tell him to stay close. Its something, and I'm just happy that he's showing signs that he understands us. His inability to sleep carries over to camping, and he woke up around 3 AM.. which, coincidentally was about the time I went to bed. We just resign ourselves to the fact that we won't sleep when we go camping. Its the price we pay to do what we love.
This morning I went to meet Jake's special ed teacher and my cousin Amber, his speech teacher at Westside elementary to check out their Kindergarten program and meet the special education teacher there. They have a really nice program and really a very very nice school. Then, this afternoon I met the ladies again at Beaverdale and I was SUPER impressed. I met Ms. Nancy, the person who oversees the special autism class there. Amber, Micaela and I toured the school and then went back to Ms. Nancy's class. I was getting very excited about this school, which seems to be quite forward-thinking and I was really surprised to find such a place nestled way out in the middle of nowhere-East-Whitfield. Ms. Nancy began speaking to me privately and said "Well, I've only observed Jake for one day, but I don't think he's ready for kindergarten, and here's why..." My heart sank. There are really no other options for him other than repeating Pioneer headstart again, and I KNOW he's bored with that and needs more challenges. I thought she was saying that he wasn't ready for her program, but that's not what she meant at all. I think she was quelling my enthusiasm that Jake might be ready for going to the Kindergarten classroom for much of the day. She disagrees (which is fine, since I really have no idea what a kindergarten class looks like anyway). She thinks that Jake SHOULD come to her class, but with the expectancy that he is going to need a lot of help, and may spend much of his time working with her or her assistant. He needs to work on being able to sit still and concentrate for more than a few minutes at a time, among other things. The prospect being that this year be a "practice" year of kindergarten, with the expectation that he will repeat K again next year. I am happy with that.
I have only one concern about him going to a school that is so far away, and that is that if he rides the bus, it will come at some ungodly hour like 6 AM.. which will be hard. We can drive him, but the school is about a half hour away, and that can get tedious and very expensive. But honestly, as far as I can tell right now, transportation is the ONLY concern and that's just a matter of convenience and not worth giving up such an amazing opportunity for Jake. While Westside is really nice, I really think that Beaverdale is more specialized and exactly what Jake needs.
I will be going to Pioneer headstart for an arena meeting with about 10 people or so who seem to care a lot about my son at 7:30 on Wednesday morning. I will have both kids in tow, because childcare just isn't in the cards that day. I'll tell them YES to Beaverdale Elementary, and I'll sign a bunch of papers and hopefully someone will hold Manny for me for part of the time.
The frenzy of meetings to coordinate the next step in Jake's education has fallen at an interesting time. Sunday I went to the Chattanooga Market as a consumer (SO much fun!.. I had no idea what it felt like just to go and SHOP) and then realized that the big two-day "Beast Feast" is this weekend. Several acts that I want to see will be playing, and it is a great opportunity to vend and make some money. Despite the fact that I'm very understocked, I decided to take it on, and I RSVP'd. I sewed every spare second that I wasn't at school meetings today, and will continue to sneak in any time I can the rest of the week. Sam came and sewed for me today, and I've asked Sherlene to help me with some finishing work (Thank you guys.. SERIOUSLY.. THANK YOU!). This weekend will be a lot of long hours and hard work, but hopefully it will pay off. Next weekend is the Thingamifling! Oh I do love the beginning of summer.
We haven't even told Jake about the Thingamifling. His "actual" birthday is Sunday, which he will spend with Mom (thanks Mom!) while Steve comes up to the market with me. Even though I'm not touting "the fling" as his birthday party, I will probably get him a chocolate cake from Greenlife Grocery and make sure he gets a song and some candle blowing going on sometime during the fling.
Tomorrow marks the one year anniversary of the day that the nurse called me and told me that they found a tumor on Manny's brain. A lot has happened in a year. My mind has changed so much over the course of that year. I can't even describe how EVERYTHING has changed.. my children, my relationship with my husband, my relationship with everything. Things went down.. they went WAY down, but they're coming up again, in a wonderful way. Manny is due another MRI in June, according to the doctors, however.. I will probably postpone that until closer to his birthday. I might get criticism for that, however.. sometimes what we don't know doesn't hurt us, and so far my mommy gut has been pretty dead-on. I think we'll ride this wave of O.K.-ness through the summer unless something changes.
The 'fling will be our practice session this year. We hope to turn it into a benefit for NF1 research in the future, and with the help of some very special friends, I think it can happen. If you would like an invite or more information, just email me at bratsacksbaby@yahoo.com BAREFOOT NELLIE! YEEEHAWW!
Well Manny is finally asleep (he's trading waking up all night for staying up until midnight the past few days, which is actually slightly more desire able). I am going to follow him.
Here's pics: http://www.flickr.com/photos/56083521@N00/sets/72157624121298620/
Manny is getting a little easier to take on these types of trips, although he's still exhausting and takes constant supervision because he wants nothing more than to escape and run down the street. Still, he has started to respond to us a little bit when we tell him to stay close. Its something, and I'm just happy that he's showing signs that he understands us. His inability to sleep carries over to camping, and he woke up around 3 AM.. which, coincidentally was about the time I went to bed. We just resign ourselves to the fact that we won't sleep when we go camping. Its the price we pay to do what we love.
This morning I went to meet Jake's special ed teacher and my cousin Amber, his speech teacher at Westside elementary to check out their Kindergarten program and meet the special education teacher there. They have a really nice program and really a very very nice school. Then, this afternoon I met the ladies again at Beaverdale and I was SUPER impressed. I met Ms. Nancy, the person who oversees the special autism class there. Amber, Micaela and I toured the school and then went back to Ms. Nancy's class. I was getting very excited about this school, which seems to be quite forward-thinking and I was really surprised to find such a place nestled way out in the middle of nowhere-East-Whitfield. Ms. Nancy began speaking to me privately and said "Well, I've only observed Jake for one day, but I don't think he's ready for kindergarten, and here's why..." My heart sank. There are really no other options for him other than repeating Pioneer headstart again, and I KNOW he's bored with that and needs more challenges. I thought she was saying that he wasn't ready for her program, but that's not what she meant at all. I think she was quelling my enthusiasm that Jake might be ready for going to the Kindergarten classroom for much of the day. She disagrees (which is fine, since I really have no idea what a kindergarten class looks like anyway). She thinks that Jake SHOULD come to her class, but with the expectancy that he is going to need a lot of help, and may spend much of his time working with her or her assistant. He needs to work on being able to sit still and concentrate for more than a few minutes at a time, among other things. The prospect being that this year be a "practice" year of kindergarten, with the expectation that he will repeat K again next year. I am happy with that.
I have only one concern about him going to a school that is so far away, and that is that if he rides the bus, it will come at some ungodly hour like 6 AM.. which will be hard. We can drive him, but the school is about a half hour away, and that can get tedious and very expensive. But honestly, as far as I can tell right now, transportation is the ONLY concern and that's just a matter of convenience and not worth giving up such an amazing opportunity for Jake. While Westside is really nice, I really think that Beaverdale is more specialized and exactly what Jake needs.
I will be going to Pioneer headstart for an arena meeting with about 10 people or so who seem to care a lot about my son at 7:30 on Wednesday morning. I will have both kids in tow, because childcare just isn't in the cards that day. I'll tell them YES to Beaverdale Elementary, and I'll sign a bunch of papers and hopefully someone will hold Manny for me for part of the time.
The frenzy of meetings to coordinate the next step in Jake's education has fallen at an interesting time. Sunday I went to the Chattanooga Market as a consumer (SO much fun!.. I had no idea what it felt like just to go and SHOP) and then realized that the big two-day "Beast Feast" is this weekend. Several acts that I want to see will be playing, and it is a great opportunity to vend and make some money. Despite the fact that I'm very understocked, I decided to take it on, and I RSVP'd. I sewed every spare second that I wasn't at school meetings today, and will continue to sneak in any time I can the rest of the week. Sam came and sewed for me today, and I've asked Sherlene to help me with some finishing work (Thank you guys.. SERIOUSLY.. THANK YOU!). This weekend will be a lot of long hours and hard work, but hopefully it will pay off. Next weekend is the Thingamifling! Oh I do love the beginning of summer.
We haven't even told Jake about the Thingamifling. His "actual" birthday is Sunday, which he will spend with Mom (thanks Mom!) while Steve comes up to the market with me. Even though I'm not touting "the fling" as his birthday party, I will probably get him a chocolate cake from Greenlife Grocery and make sure he gets a song and some candle blowing going on sometime during the fling.
Tomorrow marks the one year anniversary of the day that the nurse called me and told me that they found a tumor on Manny's brain. A lot has happened in a year. My mind has changed so much over the course of that year. I can't even describe how EVERYTHING has changed.. my children, my relationship with my husband, my relationship with everything. Things went down.. they went WAY down, but they're coming up again, in a wonderful way. Manny is due another MRI in June, according to the doctors, however.. I will probably postpone that until closer to his birthday. I might get criticism for that, however.. sometimes what we don't know doesn't hurt us, and so far my mommy gut has been pretty dead-on. I think we'll ride this wave of O.K.-ness through the summer unless something changes.
The 'fling will be our practice session this year. We hope to turn it into a benefit for NF1 research in the future, and with the help of some very special friends, I think it can happen. If you would like an invite or more information, just email me at bratsacksbaby@yahoo.com BAREFOOT NELLIE! YEEEHAWW!
Well Manny is finally asleep (he's trading waking up all night for staying up until midnight the past few days, which is actually slightly more desire able). I am going to follow him.
Wednesday, April 21, 2010
Update
So, its been a long while since I updated, so I'll do my best. Honestly I spend a lot of time on facebook, so most people just keep up with us there.
Jake is mostly over his difficult spell and, as usual, he has jumped forward in development. The reports from school are good. He's speaking more and answering questions more appropriately. He's been a joy to be around and to take on outings. A couple of weeks ago we went to the Keel Family Function over at cherokee farms in Lafayette. The weather was gorgeous, the music was wonderful, the kids had fun, and as an added bonus, it was a lucrative venture for my business. Jake and I spent the first night together just the two of us. It was fun and we fit in with the other vendors/carnies just fine. The second night Steve and Manny joined us. The second night wasn't so great since Jake puked all over the camper in the middle of the night due to too many hotdogs and soda pops. The third night my Mom kept the boys and Steve and I got to spend a night alone during the height of the festival. We met some great people and made a lot of new friends.
This past weekend was the Boxcar Pinion Memorial Bluegrass festival. For 4 years this yearly festival has been sort of a barometer for Jake's development, and well, he's doing great. He still does many things that are inappropriate for a child his age such as diving on people and touching others. He doesn't really play with the other children and gets anxious and needs to change venues often. He lets us know what he wants though, and often he wants to "go down see the music!" That makes my heart swell with pride. The first and second night he fell asleep on a rug under my easy-up declaring that he wanted to sleep outside so he could hear the music. He's my boy alright.
The last night of Boxcar was supposed to be another Mommy and Daddy date-night, however Manny got stung by a bee (he picks them up!) and I had to go pick him up and leave Steve to hang out with our friends. We've been blessed by meeting and/or getting-to-know-better some really awesome folks, Christie, August, Gwendal, Eric, Mike, Jim and all you amazing people that we've been hanging with. We've been especially blessed by our new friends Sara, Rick and Simon. They've come out to Keel and Boxcar as well as other outings with us and just seem like nice laid back folks. Its nice to have good friends with similar interests, goals and lifestyles.
Manny.. what can I say about Manny. He's really made very little improvement lately. In fact, he's a fussy, tantrumey mess. He still, of course, has no language. Lately I am seeing a bit more of a regression and its very worrisome. When he seems to forget skills I wonder if the tumor on his brain is growing or changing, or if he goes through a spell of worsening motor skills I wonder if the one on his spine is causing issues, however my gut tells me all that I need to know. Last night was another night of no-sleep and I laid beside him in bed listening to him squeal and make strange noises, I noticed him doing something I know all too well. He was squealing while at the same time making popping-clicking noises deep inside his mouth. This is the first time that I've heard him engage in vocal-stimming to this extent, but I've heard it all before (remember the stimming video I made of Jake?). He's simply regressing further into autism and its heartbreaking. While Jake was clingy and hated to be left with family or strangers, Manny is indifferent, and will go-to and stay with pretty much anyone without a fuss. He cuddles, but isn't particular as to who it is. It tears my heart completely out of my chest when his Dad sometimes says "Do you think that he loves us?" or "Do you think he misses us when we're gone?" I just don't know.
Last week Steve's parents took it upon themselves to call Atlanta Speech and hearing school, where Steve's brother went when he was little, and was in the first graduating class there. They wanted to take Manny for an assessment. Although I knew that there were no further tests that they could do for Manny, I was completely and utterly floored by this step and this show of love and understanding from his family. I was really afraid that they, especially Pops, thought that this was something new and exciting that would "open the door" as Pops put it, to bringing Manny out of his darkness. Steve traveled with them while I worked, and on the way down Pops said "I bet they'll put tubes in his ears and then he'll hear and start to talk." I guess this is what happened with Steve's brother. All of the same hearing and speech tests were repeated that I've done so far, and the specialist asked if we were doing OT, Babies can't wait, Headstart, etc. She was able to tell Steve's dad that Manny could hear, was most likely autistic with sensory processing and motor planning issues and that there was nothing more that could be done for him than we are already doing at this point. I think it was a good trip, even if it was hard on Steve's dad to hear from a professional what we'd been trying to tell him already.
Throughout the spring I've been working on my physical and mental health, trying to get over the anger and dispair and move on towards hope and acceptance. My mind is opening and realizing that no matter what happens, it will be OK. Even if Manny (or any of us really) doesn't survive as long as we would want him to, or be as successful as we would like for him to be, that he's here for a purpose and he's already taught me a lot. I have the best possible support team of family and friends and especially my husband, who puts up with me and loves me no matter how bad the "bad days" are.
I know that I'm lucky to have what we have with our boys when I see other children with much more serious conditions. A little girl came to Boxcar with her nurse this weekend who was born with a tumor larger than her head attached to her skull. She sleeps most of the time, doesn't feed herself or have many skills at all, has seizures and is strapped to a chair or carried by others. Her full-time nurse was so sweet, and spotted my children's issues instantly and was open and nice to talk to. Things may get worse for Manny, my (cursed) gut tells me that they will, but right now we're OK.
After Christmas I entered into a serious health overhaul, worked with a personal trainer and completely changed my diet. I won't be able to do the personal trainer any more but hoop-dance has come into my life just at the right time and taught me to enjoy my body, as well as daily metitation and DAILY study of music, something I've needed for years. Both the dog grooming and sewing business is picking up, and 2 weeks ago the Chattanooga Market started. I was completely overwhelmed with the number of friends and family who came down for opening day to support this cause that I so truly believe in and am proud to be a part of. Thank you everybody!
Thats really all I can think of right now, and I hope this updates everybody who still reads. OH! I almost totally forgot, our party that started last year as Jake's birthday party, that will now be our summer fling, and will probably end up next year as a benefit for Neurofibromatosis research, is in just a few weeks. It wasn't working out with the SPB boys due to simple "not-meant-to-be-ness" but we are really pleased that we were able to get Barefoot Nellie to come play some old fashioned bluegrass tunes for us. We are so excited we can hardly stand it.
See you there :-)
P.S. my camera is broken.. so no boxcar pics yet.
Jake is mostly over his difficult spell and, as usual, he has jumped forward in development. The reports from school are good. He's speaking more and answering questions more appropriately. He's been a joy to be around and to take on outings. A couple of weeks ago we went to the Keel Family Function over at cherokee farms in Lafayette. The weather was gorgeous, the music was wonderful, the kids had fun, and as an added bonus, it was a lucrative venture for my business. Jake and I spent the first night together just the two of us. It was fun and we fit in with the other vendors/carnies just fine. The second night Steve and Manny joined us. The second night wasn't so great since Jake puked all over the camper in the middle of the night due to too many hotdogs and soda pops. The third night my Mom kept the boys and Steve and I got to spend a night alone during the height of the festival. We met some great people and made a lot of new friends.
This past weekend was the Boxcar Pinion Memorial Bluegrass festival. For 4 years this yearly festival has been sort of a barometer for Jake's development, and well, he's doing great. He still does many things that are inappropriate for a child his age such as diving on people and touching others. He doesn't really play with the other children and gets anxious and needs to change venues often. He lets us know what he wants though, and often he wants to "go down see the music!" That makes my heart swell with pride. The first and second night he fell asleep on a rug under my easy-up declaring that he wanted to sleep outside so he could hear the music. He's my boy alright.
The last night of Boxcar was supposed to be another Mommy and Daddy date-night, however Manny got stung by a bee (he picks them up!) and I had to go pick him up and leave Steve to hang out with our friends. We've been blessed by meeting and/or getting-to-know-better some really awesome folks, Christie, August, Gwendal, Eric, Mike, Jim and all you amazing people that we've been hanging with. We've been especially blessed by our new friends Sara, Rick and Simon. They've come out to Keel and Boxcar as well as other outings with us and just seem like nice laid back folks. Its nice to have good friends with similar interests, goals and lifestyles.
Manny.. what can I say about Manny. He's really made very little improvement lately. In fact, he's a fussy, tantrumey mess. He still, of course, has no language. Lately I am seeing a bit more of a regression and its very worrisome. When he seems to forget skills I wonder if the tumor on his brain is growing or changing, or if he goes through a spell of worsening motor skills I wonder if the one on his spine is causing issues, however my gut tells me all that I need to know. Last night was another night of no-sleep and I laid beside him in bed listening to him squeal and make strange noises, I noticed him doing something I know all too well. He was squealing while at the same time making popping-clicking noises deep inside his mouth. This is the first time that I've heard him engage in vocal-stimming to this extent, but I've heard it all before (remember the stimming video I made of Jake?). He's simply regressing further into autism and its heartbreaking. While Jake was clingy and hated to be left with family or strangers, Manny is indifferent, and will go-to and stay with pretty much anyone without a fuss. He cuddles, but isn't particular as to who it is. It tears my heart completely out of my chest when his Dad sometimes says "Do you think that he loves us?" or "Do you think he misses us when we're gone?" I just don't know.
Last week Steve's parents took it upon themselves to call Atlanta Speech and hearing school, where Steve's brother went when he was little, and was in the first graduating class there. They wanted to take Manny for an assessment. Although I knew that there were no further tests that they could do for Manny, I was completely and utterly floored by this step and this show of love and understanding from his family. I was really afraid that they, especially Pops, thought that this was something new and exciting that would "open the door" as Pops put it, to bringing Manny out of his darkness. Steve traveled with them while I worked, and on the way down Pops said "I bet they'll put tubes in his ears and then he'll hear and start to talk." I guess this is what happened with Steve's brother. All of the same hearing and speech tests were repeated that I've done so far, and the specialist asked if we were doing OT, Babies can't wait, Headstart, etc. She was able to tell Steve's dad that Manny could hear, was most likely autistic with sensory processing and motor planning issues and that there was nothing more that could be done for him than we are already doing at this point. I think it was a good trip, even if it was hard on Steve's dad to hear from a professional what we'd been trying to tell him already.
Throughout the spring I've been working on my physical and mental health, trying to get over the anger and dispair and move on towards hope and acceptance. My mind is opening and realizing that no matter what happens, it will be OK. Even if Manny (or any of us really) doesn't survive as long as we would want him to, or be as successful as we would like for him to be, that he's here for a purpose and he's already taught me a lot. I have the best possible support team of family and friends and especially my husband, who puts up with me and loves me no matter how bad the "bad days" are.
I know that I'm lucky to have what we have with our boys when I see other children with much more serious conditions. A little girl came to Boxcar with her nurse this weekend who was born with a tumor larger than her head attached to her skull. She sleeps most of the time, doesn't feed herself or have many skills at all, has seizures and is strapped to a chair or carried by others. Her full-time nurse was so sweet, and spotted my children's issues instantly and was open and nice to talk to. Things may get worse for Manny, my (cursed) gut tells me that they will, but right now we're OK.
After Christmas I entered into a serious health overhaul, worked with a personal trainer and completely changed my diet. I won't be able to do the personal trainer any more but hoop-dance has come into my life just at the right time and taught me to enjoy my body, as well as daily metitation and DAILY study of music, something I've needed for years. Both the dog grooming and sewing business is picking up, and 2 weeks ago the Chattanooga Market started. I was completely overwhelmed with the number of friends and family who came down for opening day to support this cause that I so truly believe in and am proud to be a part of. Thank you everybody!
Thats really all I can think of right now, and I hope this updates everybody who still reads. OH! I almost totally forgot, our party that started last year as Jake's birthday party, that will now be our summer fling, and will probably end up next year as a benefit for Neurofibromatosis research, is in just a few weeks. It wasn't working out with the SPB boys due to simple "not-meant-to-be-ness" but we are really pleased that we were able to get Barefoot Nellie to come play some old fashioned bluegrass tunes for us. We are so excited we can hardly stand it.
See you there :-)
P.S. my camera is broken.. so no boxcar pics yet.
Sunday, March 21, 2010
A sad video, and a happy one
I took a video thursday to try to illustrate how worked up and anxious Jake has been lately. This isn't a tantrum, this is how he has been acting at home for a couple of weeks. The high pitched "uhhh uhhh uhhhh" was pretty much a constant. Just a little ball of nerves. Everything is "scary." I know this is a long one, and hard to watch. A couple of things to notice: His unusual language pattern "No broke on the school!" (I'm going to break the school? Maybe?) He makes an "explosion" sound and sign when he gets worked up talking about school to demonstrate how much he doesn't want to go to school. Random sentences "Want some helicopter." Oh, and he has been eating Mommy's dark chocolate hence the Joker mouth.
Maybe that helps to show why I haven't been able to blog lately... I've just been a wreck hoping that eventually SOMETHING would make him happy again. Sometimes I forget that he has these spells when he's trying to work through something new. The past few days he has made a 180 degree turnaround and has been happier, has begun to talk more, and although he has had some tantrums (what almost 5 year old doesn't), those tantrums have a beginning, and so thankfully, an end. I didn't know if I could endure another rainy day stuck indoors, but here is how most of the day was spent:
At least he's quiet.
Deep cleansing breath.
Maybe that helps to show why I haven't been able to blog lately... I've just been a wreck hoping that eventually SOMETHING would make him happy again. Sometimes I forget that he has these spells when he's trying to work through something new. The past few days he has made a 180 degree turnaround and has been happier, has begun to talk more, and although he has had some tantrums (what almost 5 year old doesn't), those tantrums have a beginning, and so thankfully, an end. I didn't know if I could endure another rainy day stuck indoors, but here is how most of the day was spent:
At least he's quiet.
Deep cleansing breath.
Thursday, March 18, 2010
I've been run down...
I can't believe that its been over a month since I blogged. My dad actually wrote me an email and asked if I had moved my webpage. Honestly, facebook is fun, and I love posting about our antics and having our experience validated by my friends, but I post the less exciting details here. I don't even know what to say about what has been going on this month, its been hectic, there is no schedule,....
Manny has been going to therapy with Cindy on Friday mornings. She wants to work with him with weighted clothes, pressure suits and other things that I am only barely beginning to understand. I have had experience with restless leg syndrome, and I understand the way that dogs experience the world. I try my best to try to understand how my children must see the world. I am capable of sewing some of the therapy equipment that is suggested to me, however I am having a really hard time motivating myself to sew some new items to try to increase sales, since business is at a standstill. It is hard to explain, but I really want several DAYS to lock myself into the sewing room and create, sew awesome backpacks and messengers that people will buy, pants for my kids, a dress for me, a pair of shorts for Steve for his birthday that has come and gone.... but instead my time is cut into one or two hour pieces, interrupted by dog grooming clients that barely pay me for my time, my late obsession with getting fit and healthy (just another constant source of guilt), laundry that is getting behind .. and scattered amongst days. I shouldn't really complain and act like an uptight artist type.. but it is still frustrating.. the job that used to be a "real job" has turned into a big fat flop... it will get better, I'm sure?
Gosh, that last paragraph describes exactly why I have avoided blogging for so long. I am losing my ability to organize my thoughts, I think.
Please enjoy this video of a talk given by the great autistic scholar, Temple Grandin. I can't imagine, if you know and love Jake, or me, for that matter, this video should make you go "oooooh.. yeah.. now I get it" :
http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html
Manny still wasn't sleeping, as of 2 weeks ago, more than a few hours per night. It was enough to make everyone insane. Its really hard to explain to anyone what it is like to go without "real" sleep for 2 or 3 years. Most people think that you are exxaggerating. Those who don't think that you are exaggerating think that you aren't doing it right,a and if you'd just impart some harsher sleep tactics..... And only the most special of people are willing to offer to help.. on a weeknight.. just cause... (thanks, y'all).
One night Manny woke up at 11:30 Pm and didn't go back to sleep for 14 hours (after waking us up for 3 consecutive nights after a few hours of sleep). Jake got up at 4:30 AM and due to a frustrated mommy and a badly timed JERK to a blanket that Jake was standing/pulling on, Jake fell and his teeth hit the hardwood floor and his two front teeth ended up busted loose. I"m not going to talk a lot more about this incident.. because it was horrible.. probably the worst moment in my entire life. I need to push the keyboard away for just a few minutes so I can cry....
Jake completely blames me for this incident, because I was obviously angry when it happened... though I never thought he'd hit the floor if I jerked the blanket. He shows many signs that he is traumatized. Just like when I tried to send him to preschool when he was 3, he has decided that he MUST wear a hat, even when he's asleep. One of his teeth has nerve damage so it is dying. The teachers at school have showed a concern so I have taken him by Dr. Patterson's office to see if there's anything to be done for his dead tooth. No, it will be fine.. many children fall and bust their teeth... its a common injury.....
The incident has opened a new chapter in my relationship with my children. I must learn to keep my temper, no matter how it is challenged, move physically slower when I am angry, and try to accept what is happening in my life, even if it means less sleep.. much less sleep. Jake was already having a "spell" of unusual and really neurotic behaviour before this incident.. it couldn't have come at a worse time and I can't stop blaming msyelf.
At the advice of other parents, literature, and Manny's therapist, we have been giving him melatonin supplements. The change is so insanely dramatic I am almost afraid to post it here. With 3-4 mg of melatonin, Manny tends to sleep through the night from around 9 PM until 6 AM (give or take).
We barely know what to do when we wake up at 5 or 6 AM and he is still asleep...
I anguished over the decision to finally try to medicate him, even with melatonin.. which is a STRONG drug to me (makes me disoriented/sleepwalk, with just 1 MG). Finally, out of desperation, I gave him 3 MG of sublingual melatonin. He slept all night, until 6 AM.. a first. He had only been sleeping from about 8 or 9 until 2 or 3 AM consistently.
I was hesistant to admit to "conventional" practicioners that I was giving him melatonin.. I usually get chastised for pretty much anything I do.
Cindy, as usual, came to my rescue and agreed that a couple of weeks of melatonin therapy might jump-start his own pineal gland. I also read buku studies showing that children with NF1 may not produce melatonin all night.. and have a problem with night-waking. Also..the pineal gland is part of the thalmus.. and located very close to Manny's tumor.
While visiting Greenlife on Steve's birthday celebration (I think he had fun) to pick up a new supply of melatonin.. we went to check out at the check-out stand. The young lady running the register beeped our melatonin and said "be careful with that stuff.. its serious medicine."
"umm.. yeah." I said, kinda stunned. "I can't really take it" (i can't!)
she said "well, if you take it a lot, you become dependent on it, and your brain can't make your own melatonin, just be careful with it.. i'm not a fan."
I anguish. I lay awake. I can barely stand myself I'm so worked up over whether or not I'm making the right decisions for my children. If you run the checkout counter of a health food store... Please shut up.
Anne Monk, the special instructor from Babies Can't Wait works 1 day per week with Many at his preschool. Steve (and I) are always really happy when Manny says "juice" or "cheese"... he hasn't said many more words than that. I try.. i swear I try to stay positive. I think that Manny may obtain a pretty good vocabulary of nouns, however.. I am not sitting here thinking that he'll snap out of it, and ever become an adult who isn't a special needs person. Eveyone gets really angry at me for thinking that.
Steve and I have been very very lucky to have been able to attend several music events: Yonder at the Tabernacle, Further at the Tabernacle, I went alone/with friends to see Trey at the Tabernacle, Steve saw Sam Bush at Rhytmn and Brews, and we both caught Cornmeal this past weekend at rhythm and Brews.
Steve's birthday was yesterday on St. Patty's, and he wanted to go out. Unfortunately he was confined to the hours of 2 PM until 6 PM for his party. We lucked out, and after a wonderful lunch at Terminal Brewhouse we headed to Greenlife for whisky tasting on to St. Elmo for a crazy and impromptu parade and then onto the Moccasin Bend Brewhouse. I think he enjoyed himself :)
Last year we had a rockin cool time at Jake's birthday party. I am hesistant to call this years "Spring Thingamafling" a birthday party, but it should be a fun time. Don't tell anyone, but SLIM PICKINS! should be there. Start marking May 22 on your calendar.
Thats the best I can do to sum up a whole month :) Cheers.
Manny has been going to therapy with Cindy on Friday mornings. She wants to work with him with weighted clothes, pressure suits and other things that I am only barely beginning to understand. I have had experience with restless leg syndrome, and I understand the way that dogs experience the world. I try my best to try to understand how my children must see the world. I am capable of sewing some of the therapy equipment that is suggested to me, however I am having a really hard time motivating myself to sew some new items to try to increase sales, since business is at a standstill. It is hard to explain, but I really want several DAYS to lock myself into the sewing room and create, sew awesome backpacks and messengers that people will buy, pants for my kids, a dress for me, a pair of shorts for Steve for his birthday that has come and gone.... but instead my time is cut into one or two hour pieces, interrupted by dog grooming clients that barely pay me for my time, my late obsession with getting fit and healthy (just another constant source of guilt), laundry that is getting behind .. and scattered amongst days. I shouldn't really complain and act like an uptight artist type.. but it is still frustrating.. the job that used to be a "real job" has turned into a big fat flop... it will get better, I'm sure?
Gosh, that last paragraph describes exactly why I have avoided blogging for so long. I am losing my ability to organize my thoughts, I think.
Please enjoy this video of a talk given by the great autistic scholar, Temple Grandin. I can't imagine, if you know and love Jake, or me, for that matter, this video should make you go "oooooh.. yeah.. now I get it" :
http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html
Manny still wasn't sleeping, as of 2 weeks ago, more than a few hours per night. It was enough to make everyone insane. Its really hard to explain to anyone what it is like to go without "real" sleep for 2 or 3 years. Most people think that you are exxaggerating. Those who don't think that you are exaggerating think that you aren't doing it right,a and if you'd just impart some harsher sleep tactics..... And only the most special of people are willing to offer to help.. on a weeknight.. just cause... (thanks, y'all).
One night Manny woke up at 11:30 Pm and didn't go back to sleep for 14 hours (after waking us up for 3 consecutive nights after a few hours of sleep). Jake got up at 4:30 AM and due to a frustrated mommy and a badly timed JERK to a blanket that Jake was standing/pulling on, Jake fell and his teeth hit the hardwood floor and his two front teeth ended up busted loose. I"m not going to talk a lot more about this incident.. because it was horrible.. probably the worst moment in my entire life. I need to push the keyboard away for just a few minutes so I can cry....
Jake completely blames me for this incident, because I was obviously angry when it happened... though I never thought he'd hit the floor if I jerked the blanket. He shows many signs that he is traumatized. Just like when I tried to send him to preschool when he was 3, he has decided that he MUST wear a hat, even when he's asleep. One of his teeth has nerve damage so it is dying. The teachers at school have showed a concern so I have taken him by Dr. Patterson's office to see if there's anything to be done for his dead tooth. No, it will be fine.. many children fall and bust their teeth... its a common injury.....
The incident has opened a new chapter in my relationship with my children. I must learn to keep my temper, no matter how it is challenged, move physically slower when I am angry, and try to accept what is happening in my life, even if it means less sleep.. much less sleep. Jake was already having a "spell" of unusual and really neurotic behaviour before this incident.. it couldn't have come at a worse time and I can't stop blaming msyelf.
At the advice of other parents, literature, and Manny's therapist, we have been giving him melatonin supplements. The change is so insanely dramatic I am almost afraid to post it here. With 3-4 mg of melatonin, Manny tends to sleep through the night from around 9 PM until 6 AM (give or take).
We barely know what to do when we wake up at 5 or 6 AM and he is still asleep...
I anguished over the decision to finally try to medicate him, even with melatonin.. which is a STRONG drug to me (makes me disoriented/sleepwalk, with just 1 MG). Finally, out of desperation, I gave him 3 MG of sublingual melatonin. He slept all night, until 6 AM.. a first. He had only been sleeping from about 8 or 9 until 2 or 3 AM consistently.
I was hesistant to admit to "conventional" practicioners that I was giving him melatonin.. I usually get chastised for pretty much anything I do.
Cindy, as usual, came to my rescue and agreed that a couple of weeks of melatonin therapy might jump-start his own pineal gland. I also read buku studies showing that children with NF1 may not produce melatonin all night.. and have a problem with night-waking. Also..the pineal gland is part of the thalmus.. and located very close to Manny's tumor.
While visiting Greenlife on Steve's birthday celebration (I think he had fun) to pick up a new supply of melatonin.. we went to check out at the check-out stand. The young lady running the register beeped our melatonin and said "be careful with that stuff.. its serious medicine."
"umm.. yeah." I said, kinda stunned. "I can't really take it" (i can't!)
she said "well, if you take it a lot, you become dependent on it, and your brain can't make your own melatonin, just be careful with it.. i'm not a fan."
I anguish. I lay awake. I can barely stand myself I'm so worked up over whether or not I'm making the right decisions for my children. If you run the checkout counter of a health food store... Please shut up.
Anne Monk, the special instructor from Babies Can't Wait works 1 day per week with Many at his preschool. Steve (and I) are always really happy when Manny says "juice" or "cheese"... he hasn't said many more words than that. I try.. i swear I try to stay positive. I think that Manny may obtain a pretty good vocabulary of nouns, however.. I am not sitting here thinking that he'll snap out of it, and ever become an adult who isn't a special needs person. Eveyone gets really angry at me for thinking that.
Steve and I have been very very lucky to have been able to attend several music events: Yonder at the Tabernacle, Further at the Tabernacle, I went alone/with friends to see Trey at the Tabernacle, Steve saw Sam Bush at Rhytmn and Brews, and we both caught Cornmeal this past weekend at rhythm and Brews.
Steve's birthday was yesterday on St. Patty's, and he wanted to go out. Unfortunately he was confined to the hours of 2 PM until 6 PM for his party. We lucked out, and after a wonderful lunch at Terminal Brewhouse we headed to Greenlife for whisky tasting on to St. Elmo for a crazy and impromptu parade and then onto the Moccasin Bend Brewhouse. I think he enjoyed himself :)
Last year we had a rockin cool time at Jake's birthday party. I am hesistant to call this years "Spring Thingamafling" a birthday party, but it should be a fun time. Don't tell anyone, but SLIM PICKINS! should be there. Start marking May 22 on your calendar.
Thats the best I can do to sum up a whole month :) Cheers.
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