I am in need of a battery recharge and i am thankful that I am going away overnight in 2 weeks, I only hope that I make it until that wonderful night away. I think what I could really use is to go away one morning and come back after a full night of sleep and a full day of sleep.....maybe then I would feel completely and totally rested. Then again, are any parents truly well rested? I just feel like right now my anxiety is sky high......
David is doing the nighttime cough that means he is having seizures. He is awake a lot during the night and just doesn't "look right". His teacher has noticed a change in him, I am noticing that he is having trouble getting some words out....certainly, most people would notice nothing right now, but I know my little boy intimately, and I know when he is just not 100%. So while he is ok, he is just not completely well, and so I am worried as any good mom would be.....so in my worry about David I am functioning at not quite 100%.
Add to that worry about David, that I am thinking nonstop about what to do with Jacob next year. Should he go to kindergarten? Will he be better off to wait? Will he receive speech services if he doesn't go to kindergarten? Will he struggle and be frustrated if I send him to kindergarten and he isn't quite ready? I feel like he could use another year to mature. Unfortunately, he may not get the speech services he really needs if he stays in preschool another year, so it is hard to know what to do to make a good decision for jacob.
On top of all of this Matthew is still wetting the bed, and I am exhausted. It is constant....every single night. He wets through 2 sheets, 4 adult diapers, 2 diaper pads that are meant to keep him dry, and a chuck sheet on the bed. His new obsession is drinking and he is expending so much energy trying to access liquid however he can. i truly don't know which of us is struggling more....I can't stand to listen to the obsession and I am sure that thinking about drinking all day long cannot be good for him. Every place he goes he notices where he can get a drink, then he works to come up with a reason that I will allow him to get a drink, then he has to put on a show to prove how "thirsty" he is......he has to be exhausted.
I waited weeks to get him into a Pediatric Urologist today and I was so hopeful that he would be able to help us......want to know what he suggests.......wait for it.....it is impressive, definitely worth his years at Medical school.........
Give him adult diapers for sleeping and collect his urine over a weekend!
As I started to get hysterical in the office I reiterated how many pullups he was using. I begged the doctor for input as to what else we could use....his answer....
DEPENDS....give the boy DEPENDS.....
what does he think we have been using for months already? Does he have any idea how hard it will be to collect urine for matthew for a full weekend? He wants me to spend one night waking him every 2 hours to take him to the bathroom.....if I thought this would all end with a solution, I would get right on top of all of it, I promise I would....but it turns out there aren't any solutions.....there is no magic cure.
I have rarely left an appointment feeling quite so defeated. I cannot do this much longer. As a single mom I am exhausted, I am cooked, I am totally and completely done. After a small, ok, not SO small, temper tantrum, I decided to turn to bribery as my last ditch effort to see if I could get matthew to help me keep him dry. (I felt like screaming "help me Help you!" )
I have offered up gum whenever he is thirsty to see if this will help, and I have offered an overnight at his grandparents when he has 3 dry nights! To sweeten the deal, I offered to buy him a bike. Truly, right now I would give him anything for a night with dry sheets! I need a vacation, I need some time away, I need some time by myself to simply sleep.
I feel like I am teetering on the edge and the edge is getting smaller and smaller and I dont know how much longer I can hang on. Once again I am at that point where something has to give. I really need a dry bed, I think I could cope with the other ups and downs of life, if we had a dry bed, or dare I dream, 2 dry nights in a row. Please help, and pray to the gods of dryness for us, and if you have any extra prayers, feel free to pray to the god of kindergarten decisions.....I need to stop being the decision maker for a little while....maybe it is time to get a new Crazy 8 ball and see if it can make some good decisions for my family!
Tuesday, March 29, 2011
Friday, March 25, 2011
Growth for the Bloom Boys!
Tonight was the Learning Fair at Matthew's school.......While I always like the idea of going to events at Matthew's or David's school, usually there is a reason we can't go, or, truth be told, I find a reason we can't go.
It is hard to bring 3 kids to any school event on a Friday night. It is harder to bring 2 school age kids and one preschooler to a school event on a Friday night. It is even harder as a single mom, to bring 2 school age kids and one preschooler to a school event on a Friday night.
That said, I am so glad that we went tonight. The boys have grown up a lot, and it is important that we try these different experiences so that the boys have different opportunities. These programs are also a great way for me to see just how far we have come!
I clearly remember going to the Learning Fair 2 years ago. Matthew was in 2nd grade, David was 4 and Jacob was 2. We sat through a concert and then did some fun stuff with the music teacher, but I also spent a lot of time wrestling with the boys, chasing Jacob and keeping David calm.....
Fast forward 2 years and we are doing GREAT!
Tonight we saw a teacher from Mad Science- he was a little over the top for me, but the boys did great. The lesson was on air pressure, and went WAY OVER MY HEAD, but he used a leaf blower, and created a version of a hovercraft so the boys were thrilled!
Then we went to a Kids Cooking activity....I mean really....could there have been a better class for Matthew? He walked in and fell in love....the woman leading the class had been at Glenmont on Thursday making smoothies and he LOVED her. The way to matthew's heart is through his stomach!, so to have this woman at his school 2 days in a row, it was like the god's were smiling on matthew!
The boys all did great cutting strawberries, folding cool whip and yogurt together, and creating their own little healthy snacks. I was able to meet a few of the kids that Matthew knows at school, and I had a great time chatting with a few moms at my table.
Of course, it got a little hairy when David wanted more vanilla yogurt, and jacob wanted another dessert shell. But in all honesty, the challenges were over in less than 2 minutes! I have learned to read David better, and I knew that at 7:15 at night the last place he would want to be was in an over crowded school building.
The moms who were near us were super helpful, and you could tell that they were enjoying watching David and Jacob cut the fruit and chatter together! Matthew ended up proposing to the woman leading the session, and announcing "my mom needs to know where to buy a blender so she can make me some smoothies"!
I was able to see the humor in the entire evening, to gush a little at how well my boys listened and to bribe them to leave after the first workshop instead of staying until 8:30 making sketchbooks!
It was a fabulous night....the next time a note comes home about a school event, we will go again and try to have another success....but for tonight, I am basking in the glory that my boys did great, I did great and we were just another family at the Learning Fair!
It is hard to bring 3 kids to any school event on a Friday night. It is harder to bring 2 school age kids and one preschooler to a school event on a Friday night. It is even harder as a single mom, to bring 2 school age kids and one preschooler to a school event on a Friday night.
That said, I am so glad that we went tonight. The boys have grown up a lot, and it is important that we try these different experiences so that the boys have different opportunities. These programs are also a great way for me to see just how far we have come!
I clearly remember going to the Learning Fair 2 years ago. Matthew was in 2nd grade, David was 4 and Jacob was 2. We sat through a concert and then did some fun stuff with the music teacher, but I also spent a lot of time wrestling with the boys, chasing Jacob and keeping David calm.....
Fast forward 2 years and we are doing GREAT!
Tonight we saw a teacher from Mad Science- he was a little over the top for me, but the boys did great. The lesson was on air pressure, and went WAY OVER MY HEAD, but he used a leaf blower, and created a version of a hovercraft so the boys were thrilled!
Then we went to a Kids Cooking activity....I mean really....could there have been a better class for Matthew? He walked in and fell in love....the woman leading the class had been at Glenmont on Thursday making smoothies and he LOVED her. The way to matthew's heart is through his stomach!, so to have this woman at his school 2 days in a row, it was like the god's were smiling on matthew!
The boys all did great cutting strawberries, folding cool whip and yogurt together, and creating their own little healthy snacks. I was able to meet a few of the kids that Matthew knows at school, and I had a great time chatting with a few moms at my table.
Of course, it got a little hairy when David wanted more vanilla yogurt, and jacob wanted another dessert shell. But in all honesty, the challenges were over in less than 2 minutes! I have learned to read David better, and I knew that at 7:15 at night the last place he would want to be was in an over crowded school building.
The moms who were near us were super helpful, and you could tell that they were enjoying watching David and Jacob cut the fruit and chatter together! Matthew ended up proposing to the woman leading the session, and announcing "my mom needs to know where to buy a blender so she can make me some smoothies"!
I was able to see the humor in the entire evening, to gush a little at how well my boys listened and to bribe them to leave after the first workshop instead of staying until 8:30 making sketchbooks!
It was a fabulous night....the next time a note comes home about a school event, we will go again and try to have another success....but for tonight, I am basking in the glory that my boys did great, I did great and we were just another family at the Learning Fair!
David
I am so excited....which truly seems like an odd emotion based on the news I received today, but excited is how I am feeling, so I am going to go with it!
We have seen the spectrum of Doctor's, everything including developmental specialists, neurologists, neuropsychologists, developmental psychologists, pediatric epileptologits, and more......and the one thing that no one has been able to determine is what is the official diagnosis for David, and what is the cause of his issues......
Today we got the beginning of an answer!
In February we went to see the geneticist at Albany Med, Dr Darius Adams. It was an appointment that I didnt really want to go to, I felt it was a waste of time, but I decided that since we had waited months for the appointment, it couldn't hurt to go. The appointment itself was pretty brief. He and I discussed David's development since birth. He examined David and ran some urine tests and blood tests. I was told it would take about 6 weeks to get any results and to call the office to check in.
After calling for about a week, I finally spoke to Katie, one of the nurses, today. Apparently a genetic duplication has been found on one of David's chromosomes. At first Katie said that this may or may not be the cause of David's issues. As she explained this mutation is a pretty variable duplication, and it has some effects on some people and on others it presents with little or no effect developmentally.
As she looked up more information however it became clear to me that this has to be the way to explain David. This duplication is known to cause seizures, autism, speech delays and motor delays.....The consistent question for 5 years now has been "does david have autism" with the answer being "it really depends on the day you see him. He certainly meets a lot of the criteria for diagnosing autism, but an autism diagnosis alone doesnt describe David completely". The other question has been "does David have seizures", with the answer being " sure as heck seems like it, but his EEG is not clear".
Essentially, knowing that there is a chromosomal issue allows me to put all of this into a little package, and gives me an answer to the question that I have struggled with. I have always felt that there had to be a way to explain all of the things David struggles with. This chromosomal error gives us that explanation.
Whether there is a way to treat it or not, and whether it will help to predict the future or not, I have an answer.....I have a path to follow, and tonight I will sleep more soundly!
As a parent I have struggled for more than 6 years. I have been to doctors I have loved and doctors I have hated! I have had people doubt what I see in David, and people say that it is time to stop looking for a diagnosis. I am the kind of person who needs an answer. I can deal with anything, but I like to know what I am dealing with.
I am looking forward to meeting with the geneticist in a few weeks to learn more about what this duplication means for David educationally, socially and for the future...
We have seen the spectrum of Doctor's, everything including developmental specialists, neurologists, neuropsychologists, developmental psychologists, pediatric epileptologits, and more......and the one thing that no one has been able to determine is what is the official diagnosis for David, and what is the cause of his issues......
Today we got the beginning of an answer!
In February we went to see the geneticist at Albany Med, Dr Darius Adams. It was an appointment that I didnt really want to go to, I felt it was a waste of time, but I decided that since we had waited months for the appointment, it couldn't hurt to go. The appointment itself was pretty brief. He and I discussed David's development since birth. He examined David and ran some urine tests and blood tests. I was told it would take about 6 weeks to get any results and to call the office to check in.
After calling for about a week, I finally spoke to Katie, one of the nurses, today. Apparently a genetic duplication has been found on one of David's chromosomes. At first Katie said that this may or may not be the cause of David's issues. As she explained this mutation is a pretty variable duplication, and it has some effects on some people and on others it presents with little or no effect developmentally.
As she looked up more information however it became clear to me that this has to be the way to explain David. This duplication is known to cause seizures, autism, speech delays and motor delays.....The consistent question for 5 years now has been "does david have autism" with the answer being "it really depends on the day you see him. He certainly meets a lot of the criteria for diagnosing autism, but an autism diagnosis alone doesnt describe David completely". The other question has been "does David have seizures", with the answer being " sure as heck seems like it, but his EEG is not clear".
Essentially, knowing that there is a chromosomal issue allows me to put all of this into a little package, and gives me an answer to the question that I have struggled with. I have always felt that there had to be a way to explain all of the things David struggles with. This chromosomal error gives us that explanation.
Whether there is a way to treat it or not, and whether it will help to predict the future or not, I have an answer.....I have a path to follow, and tonight I will sleep more soundly!
As a parent I have struggled for more than 6 years. I have been to doctors I have loved and doctors I have hated! I have had people doubt what I see in David, and people say that it is time to stop looking for a diagnosis. I am the kind of person who needs an answer. I can deal with anything, but I like to know what I am dealing with.
I am looking forward to meeting with the geneticist in a few weeks to learn more about what this duplication means for David educationally, socially and for the future...
Wednesday, February 2, 2011
not the mom i thought i would be
This parenting thing is for the birds....and yes, as I parent Jacob there are plenty of things that happen that I regret, or I wish I hadn't done, but trust me,there is nothing that a typical child can do that can hold a candle to a child with Fetal Alcohol Syndrome...
I seriously do not know which end is up after tonight....I don't know what to do, I dont know how to do it better, and I am pretty sure I need a break, but in parenting THERE IS NO BREAK....and worst of all, even if I took a break, it all starts back up again once the break is over.....so really, there is no break.
Allow me to walk you through what happened.....
Today was a snow day, I knew it was going to be a snow day, and I know David likes to cook, so I decided that we would make a cake. We got up, the day started pretty well and Matthew asked to go outside.....he went out, and actually for one of the first times ever, ended up at a neighborhood child's house and was there for a few hours.
I spoke to the mom a few times, and he was doing fine, so I went on with my day with Jacob and David.
We had a great time baking a cake, we built a fort, it was a busy day, a little stressful, but nothing I couldnt handle.....About 2:30 Matthew came home and still wanted to play outside, so he dropped off some cookies from the playdate, and 3 packets of hot cocoa and went outside to play.
The little guys had been resting, but they got up around 3, and we hung out on the couch together. Eventually Matthew came inside. The energy level in the house was a little loud, and we stopped playing a few times to talk about being kind to each other etc.... finally at 4:45 I decided I needed a mommy break and told the boys they could watch a video.
Well things got a little quiet, so I became concerned. After a little asking, I found out that Matthew had been eating frosting out of the container and it was gone.....so I told him I was going to throw out the hot cocoa. Now you have to know that Matthew has been peeing the bed mutiple times a night for 5 weeks now, and you have to know the boy is OBSESSED with hot cocoa. So my choices were to 1. make him hot cocoa tonight- but it was late and this would lead to more bedwetting
2. not make the hot cocoa tonight and he would create a mess with it in the middle of the night due to his obsessing.
Now there were 3 packets of hot cocoa, so I asked him for all 3. He gave me 1 and then went on and on about how he didnt know where the other 2 were.....aka he was lying.
After fruitless searching around the house and me getting more and more angry, I told him he would go to bed if he didnt give it to me....suddenly.....AHA he found it on top of thefridge....really, did it get up there by itself? Really did he now know where it was the whole time? UGH
So this is where it gets frustrating, because now I know he had hid the 1 container, but he was stomping around insisting he didnt know where the other container was. WHO CAN BELIEVE HIM???? It truly became intensely frustrating....do I put him to bed? Do I trust that he doesn't know where it is? I walked him through trying to find it, and as I asked him questions this is what I would get.....
My words are in italics
"did you put the hot cocoa on top of the fridge" YES
"where is the other hot cocoa" the 2nd one was on top of the fridge
"I know you got the second one from on top of the fridge, where is the other one?" I didnt put it on top of the fridge
"ok, but you put one on top of the fridge" No, I put the second one on top of the fridge
Round and round, seriously until I didnt know which end was up.....finally I decided to drop it, and went upstairs and I found a smear of hot cocoa on the bathroom door, so of course then I had to reopen the conversation.....because now I likely have an OPEN container of hot cocoa powder...and as I began to requestion him....this is what I got:
"I hate Seany's mom....She yelled at me!" Now he had been at Tres's house,so it took me a minute to figure out who Seany's mom was, and really did I care about Seany's mom, not really because I justwanted the HOT COCOA!
Well as he continued on and on about Seany's mom it turned out he apparently had a scuffle with another mom in the neighborhood....something about a snowbank....but then as I tried to gather more info he also told me he didnt see Seany's mom today.....so really, who knows what happened.
I feel like I am going insane....I think he knows he can make me insane....so the day ended with a yelling battle, that like all yelling battles ends with me feeling like a crappy mom.....and I threw out the hot cocoa, and he ate the frosting, so there is nothing in the house to wallow my crappy mom feelings in, so I have had to sit here just feeling pretty crappy and knowing in the morning, chances are great that I will wake up to a hot cocoa mess somewhere.
:
I seriously do not know which end is up after tonight....I don't know what to do, I dont know how to do it better, and I am pretty sure I need a break, but in parenting THERE IS NO BREAK....and worst of all, even if I took a break, it all starts back up again once the break is over.....so really, there is no break.
Allow me to walk you through what happened.....
Today was a snow day, I knew it was going to be a snow day, and I know David likes to cook, so I decided that we would make a cake. We got up, the day started pretty well and Matthew asked to go outside.....he went out, and actually for one of the first times ever, ended up at a neighborhood child's house and was there for a few hours.
I spoke to the mom a few times, and he was doing fine, so I went on with my day with Jacob and David.
We had a great time baking a cake, we built a fort, it was a busy day, a little stressful, but nothing I couldnt handle.....About 2:30 Matthew came home and still wanted to play outside, so he dropped off some cookies from the playdate, and 3 packets of hot cocoa and went outside to play.
The little guys had been resting, but they got up around 3, and we hung out on the couch together. Eventually Matthew came inside. The energy level in the house was a little loud, and we stopped playing a few times to talk about being kind to each other etc.... finally at 4:45 I decided I needed a mommy break and told the boys they could watch a video.
Well things got a little quiet, so I became concerned. After a little asking, I found out that Matthew had been eating frosting out of the container and it was gone.....so I told him I was going to throw out the hot cocoa. Now you have to know that Matthew has been peeing the bed mutiple times a night for 5 weeks now, and you have to know the boy is OBSESSED with hot cocoa. So my choices were to 1. make him hot cocoa tonight- but it was late and this would lead to more bedwetting
2. not make the hot cocoa tonight and he would create a mess with it in the middle of the night due to his obsessing.
Now there were 3 packets of hot cocoa, so I asked him for all 3. He gave me 1 and then went on and on about how he didnt know where the other 2 were.....aka he was lying.
After fruitless searching around the house and me getting more and more angry, I told him he would go to bed if he didnt give it to me....suddenly.....AHA he found it on top of thefridge....really, did it get up there by itself? Really did he now know where it was the whole time? UGH
So this is where it gets frustrating, because now I know he had hid the 1 container, but he was stomping around insisting he didnt know where the other container was. WHO CAN BELIEVE HIM???? It truly became intensely frustrating....do I put him to bed? Do I trust that he doesn't know where it is? I walked him through trying to find it, and as I asked him questions this is what I would get.....
My words are in italics
"did you put the hot cocoa on top of the fridge" YES
"where is the other hot cocoa" the 2nd one was on top of the fridge
"I know you got the second one from on top of the fridge, where is the other one?" I didnt put it on top of the fridge
"ok, but you put one on top of the fridge" No, I put the second one on top of the fridge
Round and round, seriously until I didnt know which end was up.....finally I decided to drop it, and went upstairs and I found a smear of hot cocoa on the bathroom door, so of course then I had to reopen the conversation.....because now I likely have an OPEN container of hot cocoa powder...and as I began to requestion him....this is what I got:
"I hate Seany's mom....She yelled at me!" Now he had been at Tres's house,so it took me a minute to figure out who Seany's mom was, and really did I care about Seany's mom, not really because I justwanted the HOT COCOA!
Well as he continued on and on about Seany's mom it turned out he apparently had a scuffle with another mom in the neighborhood....something about a snowbank....but then as I tried to gather more info he also told me he didnt see Seany's mom today.....so really, who knows what happened.
I feel like I am going insane....I think he knows he can make me insane....so the day ended with a yelling battle, that like all yelling battles ends with me feeling like a crappy mom.....and I threw out the hot cocoa, and he ate the frosting, so there is nothing in the house to wallow my crappy mom feelings in, so I have had to sit here just feeling pretty crappy and knowing in the morning, chances are great that I will wake up to a hot cocoa mess somewhere.
:
Sunday, January 2, 2011
12 days of vacation....an intimate look at the boys 24/7
We spent the end of 2010 on an amazing trip to Disney World with my mom and then in Vero Beach with my entire extended family- all 37 of us were together!
As we headed for Disney Matthew was really struggling and my anxiety level was high. This was the first time that my mom would spend a full 12 days with us and would see the ins and outs of Matthew. David was doing well medically as we left and Jacob was your average 4year old.
As soon as we got to Florida we headed to Magic Kingdom. It was amazing to see the characters through Jacob's eyes. Given the developmental needs of Matthew and David, imagination is a skill they struggle with, so to have Jacob's eyes light up and twinkle as he rode the Buzz lightyear ride and met all of the characters was a mom moment I will not forget. He was giddy with excitement. He must have asked a million times "is it real?" You could see in his eyes that I had made his dreams come true by introducing him to Mickey, Minnie, Buzz, Woody and the gang.
We were not inside the Magic Kingdom more than 30 minutes when Matthew had his first meltdown. I have never felt so broken hearted as I watched Matthew basically go into another place emotionally.....He slammed his hand into the brick wall, he told people to leave his park, he was totally not present with us. Luckily I had brought his medication with us and within about 30 minutes he was back to our world.
We rode the race cars,the Buzz Light year ride, the Dumbo ride and went into Mickey's house. We saw the parade, watched the castle light up and basically just were all brought to life as we took in the Magical experience of Mickey World.
The next morning we got up and hurried off to Hollywood Studios. The first thing on my list was to introduce Jacob to Lightening McQueen and Mater! What a moment that was! All 3 boys were alive with excitement. To meet the real McQueen is every boys dream!
We then rode on the amazing new Toy Story Ride and spent 45 minutes waiting to meet Buzz and Woody.....to watch Jacob meet his heroes again was magic. Even David was taken with the fun of meeting Buzz Lightyear. We rode the Toy Story ride at least 3 times each time more magical than the last.
Then it was off to the Fantasmic Light show.....definitely not a show for kids prone to fear- this was most definitely the darkest disney show I have ever seen....the bad guys were fighting the good guys, and there were some fabulous special effects, but it was intense. I am not sure if this is what led toMatthew's meltdown, or if there was something else behind it but he quickly went into a very dark place that was hard to get him out of. As with everynight, Matthew is limited in how much he can drink because he is not yet dry at night. Rather than accepting this limitation, Matthew decided that he would run off to a water fountain and drink as much as he wanted. I called to him, and reminded him of the rule and when he continued to be defiant I told him that he had lost the ability to choose what drinks he would have the next day. I wasn't angry, I was matter of fact about the whole thing and Matthew knows me enough to know that being defiant will lead to a consequence. On this night though it didnt seem to matter.
I am not sure still if it was harder for me to watch him be so lost,or harder for me to know that this would be my moms first glance into this side of Matthew. For over 45 minutes I led him around by the arm as he screamed at everyone in his path to get out of his way. He screamed some obsenities, yelled at Jacob, and basically was offensive to all around us. However,as his mom, it was obvious that he was lost in his own head. Mental illness is impossible. It is heartbreaking and horrible to watch. As he screamed we got all sorts of looks, but there was nothing to do but wait for the moment to pass. As quickly as it started, it ended. He apologized and it was over, except for the fact that I was devastated to see him so lost. When all you can say is "at least he wasn't violent" and that is the positive, that is a tough statement.
Many might ask why I didnt take him from the park. Why was there no bigger consequence? There are lots of times that consequences are imposed. However,when you realize that you are dealing with someone who is not with you, to impose consequence on top of consequence becomes ridiculous. that is a lesson that has taken me years to learn. The consequence that was maintained was for his act of defiance- he did not get to choose his drink for an entire day, for Matthew this was a big deal. Beyond that he didnt mean anything that happened,none of it was intentional,he was lost in his head and we had to wait out the moment and when he returned, all was much better.
Thankfully we ended the day with the Muppet 3D movie and we ended on a high note for everyone.
On our 3rd day we started at Chef Mickey. We had our only negative Disney experience. Granted David is David,he can be a handful. We had waited about 20 mins for our reservation and were finally called and he was super excited. He ran over to a statue of Mickey and was playing with it, I ran over to move him, and a cast member slapped his hands together and screamed at him....super undisney like. Obviously again, not cool for D to be touching things he is not supposed to touch, but given David and that he was waiting a while, not a complete surprise......Luckily after a little explaining on my part and an apology on the part of the Chef Mickey staff all was good to go again, David got to meet his hero, Mickey Mouse, and we continued on with our day.
One of my missions is to help people understand that just because a child looks ok, does not mean that they are developmentally ok. It is hard to look at Matthew and David and realize that there are developmental issues. It is important to me that those around us understand my children's strengths and weaknesses and taht when we have a negative experience I help people learn to not be quick to judge a child's misbehavior. If a child does not immediately respond to a strangers redirection, either it is a very defiant child, or potentially there is a disability that is not easily observed. A typical child will respond to a redirection from a stranger.
After our fabulous Mickey breakfast, it was off to Epcot for the day. This was the first time that the boys were really old enough to appreciate Epcot and we all loved it. From the Lands to the Seas they loved all parts of Epcot. Jacob was taken with the Nemo shows, Matthew loved Soaring and David loved the land ride that tells you all about how food is made.
My mom and I were able to bond over the ultimate in embarassing moments.....We went to the Crush show. Crush is the totally cool turtle character from Nemo and he talks to the audience and answers questions about turtles. The kids are all invited to sit up front away from their parents and the parents sit on benches in the back. No sooner had the show started then a child started screaming out.....I will give you 3 guesses who that child was.....and it wasn't David or Jacob. Basically Crush, who is a fantastically sarcastic turtle, stopped his entire show to talk to the "boy who was crying out for his attention". Matthew was given the floor and proceeded to talk all about skittles and his love of skittles, while the woman next to me commented loudly that it would be nice if "Matthew's mom had control of him". Needless to say this was one of those times it was nice to not be known as "Matthew's mom" and I could sit quietly in the dark while he interrupted the show over the next 20 minutes!
For the next 2 days we made more memories in Epcot and the magic Kingdom. Finally on our last day my dad and my brother Andy's family joined us. It was fabulous to be joined by my brother, his wife and their 3 kids on our visit to the Animal Kingdom. It was a very cold day in Florida so the lines were super short and everything was easy to get into. We saw an amazing Lion King show, the Nemo show and did all of the rides in Animal Kingdom. By far one of the favorite places for everyone was the petting zoo. What great memories to watch my 3 kids and their cousins petting the animals, and brushing the animals together. We ended our night together with dinner at the Rainforest Cafe. This was the dinner when David's seizures started.....one of the worst clusters of seizures I have seen him have in years, but being surrounded by family who understood and supported him and me made it as good as possible.
This dinner concluded our fun in Disney World and we were off on our next adventure......Bloom Family Vacation in Vero Beach!
As we headed for Disney Matthew was really struggling and my anxiety level was high. This was the first time that my mom would spend a full 12 days with us and would see the ins and outs of Matthew. David was doing well medically as we left and Jacob was your average 4year old.
As soon as we got to Florida we headed to Magic Kingdom. It was amazing to see the characters through Jacob's eyes. Given the developmental needs of Matthew and David, imagination is a skill they struggle with, so to have Jacob's eyes light up and twinkle as he rode the Buzz lightyear ride and met all of the characters was a mom moment I will not forget. He was giddy with excitement. He must have asked a million times "is it real?" You could see in his eyes that I had made his dreams come true by introducing him to Mickey, Minnie, Buzz, Woody and the gang.
We were not inside the Magic Kingdom more than 30 minutes when Matthew had his first meltdown. I have never felt so broken hearted as I watched Matthew basically go into another place emotionally.....He slammed his hand into the brick wall, he told people to leave his park, he was totally not present with us. Luckily I had brought his medication with us and within about 30 minutes he was back to our world.
We rode the race cars,the Buzz Light year ride, the Dumbo ride and went into Mickey's house. We saw the parade, watched the castle light up and basically just were all brought to life as we took in the Magical experience of Mickey World.
The next morning we got up and hurried off to Hollywood Studios. The first thing on my list was to introduce Jacob to Lightening McQueen and Mater! What a moment that was! All 3 boys were alive with excitement. To meet the real McQueen is every boys dream!
We then rode on the amazing new Toy Story Ride and spent 45 minutes waiting to meet Buzz and Woody.....to watch Jacob meet his heroes again was magic. Even David was taken with the fun of meeting Buzz Lightyear. We rode the Toy Story ride at least 3 times each time more magical than the last.
Then it was off to the Fantasmic Light show.....definitely not a show for kids prone to fear- this was most definitely the darkest disney show I have ever seen....the bad guys were fighting the good guys, and there were some fabulous special effects, but it was intense. I am not sure if this is what led toMatthew's meltdown, or if there was something else behind it but he quickly went into a very dark place that was hard to get him out of. As with everynight, Matthew is limited in how much he can drink because he is not yet dry at night. Rather than accepting this limitation, Matthew decided that he would run off to a water fountain and drink as much as he wanted. I called to him, and reminded him of the rule and when he continued to be defiant I told him that he had lost the ability to choose what drinks he would have the next day. I wasn't angry, I was matter of fact about the whole thing and Matthew knows me enough to know that being defiant will lead to a consequence. On this night though it didnt seem to matter.
I am not sure still if it was harder for me to watch him be so lost,or harder for me to know that this would be my moms first glance into this side of Matthew. For over 45 minutes I led him around by the arm as he screamed at everyone in his path to get out of his way. He screamed some obsenities, yelled at Jacob, and basically was offensive to all around us. However,as his mom, it was obvious that he was lost in his own head. Mental illness is impossible. It is heartbreaking and horrible to watch. As he screamed we got all sorts of looks, but there was nothing to do but wait for the moment to pass. As quickly as it started, it ended. He apologized and it was over, except for the fact that I was devastated to see him so lost. When all you can say is "at least he wasn't violent" and that is the positive, that is a tough statement.
Many might ask why I didnt take him from the park. Why was there no bigger consequence? There are lots of times that consequences are imposed. However,when you realize that you are dealing with someone who is not with you, to impose consequence on top of consequence becomes ridiculous. that is a lesson that has taken me years to learn. The consequence that was maintained was for his act of defiance- he did not get to choose his drink for an entire day, for Matthew this was a big deal. Beyond that he didnt mean anything that happened,none of it was intentional,he was lost in his head and we had to wait out the moment and when he returned, all was much better.
Thankfully we ended the day with the Muppet 3D movie and we ended on a high note for everyone.
On our 3rd day we started at Chef Mickey. We had our only negative Disney experience. Granted David is David,he can be a handful. We had waited about 20 mins for our reservation and were finally called and he was super excited. He ran over to a statue of Mickey and was playing with it, I ran over to move him, and a cast member slapped his hands together and screamed at him....super undisney like. Obviously again, not cool for D to be touching things he is not supposed to touch, but given David and that he was waiting a while, not a complete surprise......Luckily after a little explaining on my part and an apology on the part of the Chef Mickey staff all was good to go again, David got to meet his hero, Mickey Mouse, and we continued on with our day.
One of my missions is to help people understand that just because a child looks ok, does not mean that they are developmentally ok. It is hard to look at Matthew and David and realize that there are developmental issues. It is important to me that those around us understand my children's strengths and weaknesses and taht when we have a negative experience I help people learn to not be quick to judge a child's misbehavior. If a child does not immediately respond to a strangers redirection, either it is a very defiant child, or potentially there is a disability that is not easily observed. A typical child will respond to a redirection from a stranger.
After our fabulous Mickey breakfast, it was off to Epcot for the day. This was the first time that the boys were really old enough to appreciate Epcot and we all loved it. From the Lands to the Seas they loved all parts of Epcot. Jacob was taken with the Nemo shows, Matthew loved Soaring and David loved the land ride that tells you all about how food is made.
My mom and I were able to bond over the ultimate in embarassing moments.....We went to the Crush show. Crush is the totally cool turtle character from Nemo and he talks to the audience and answers questions about turtles. The kids are all invited to sit up front away from their parents and the parents sit on benches in the back. No sooner had the show started then a child started screaming out.....I will give you 3 guesses who that child was.....and it wasn't David or Jacob. Basically Crush, who is a fantastically sarcastic turtle, stopped his entire show to talk to the "boy who was crying out for his attention". Matthew was given the floor and proceeded to talk all about skittles and his love of skittles, while the woman next to me commented loudly that it would be nice if "Matthew's mom had control of him". Needless to say this was one of those times it was nice to not be known as "Matthew's mom" and I could sit quietly in the dark while he interrupted the show over the next 20 minutes!
For the next 2 days we made more memories in Epcot and the magic Kingdom. Finally on our last day my dad and my brother Andy's family joined us. It was fabulous to be joined by my brother, his wife and their 3 kids on our visit to the Animal Kingdom. It was a very cold day in Florida so the lines were super short and everything was easy to get into. We saw an amazing Lion King show, the Nemo show and did all of the rides in Animal Kingdom. By far one of the favorite places for everyone was the petting zoo. What great memories to watch my 3 kids and their cousins petting the animals, and brushing the animals together. We ended our night together with dinner at the Rainforest Cafe. This was the dinner when David's seizures started.....one of the worst clusters of seizures I have seen him have in years, but being surrounded by family who understood and supported him and me made it as good as possible.
This dinner concluded our fun in Disney World and we were off on our next adventure......Bloom Family Vacation in Vero Beach!
Monday, December 13, 2010
all time low
I really dont know how much more I can take.....I purposely went grocery shopping today without matthew because I couldn't take another food tantrum, I just didnt have it in me. He was home when we got home and I was signing papers for his reshab worker and I asked the boys to put away the groceries.
I had a pretty good inventory in my head of what to be on the lookout for- I knew he would try to sneak the cookies and likely the crackers so I checked the location of those items. He put some of his favorite foods in a cabinet because "he forgot those go in the lockbox" and I found all of those and put them in the lock box.
But I forgot I bought 2 boxes of cereal. I had the box i bought for David, but I forgot I bought LIFE cereal.....it wasn't on my radar. I forgot to look to make sure it was put away. I spent a relaxing night at home watching tv and hanging out. All was good until I headed upstairs to bed and there in plain sight was the LIFE cereal- an opened box right next to Matthew's bed.
This means he was able to find the box, hide it upstairs somewhere I wouldnt find it, and then he was quiet enough about what he was doing so I wouldn't hear him open the box. Had he stayed awake long enough to put the box away, he could have gotten away with it and had the box for days until i noticed an influx of crumbs.
Sure, there were signs, he asked where I was when I came downstairs after putting them to bed- but this is not totally unusual. He went to bed without a fight...also not unheard of. He didnt say goodnight 15 times- strange, but not so strange that it alerted me. He didnt tease Jacob after I tucked them in-this was the most odd, but again, not so odd that I forgot to notice him NOT teasing Jacob.
Seriously, how can he put all of this together and have me not notice? Why does he put so much energy into sneaking a box of cereal upstairs and hiding it?
I know his body must hunger for the food- but he eats more than anyone needs. I know scavenging for food and obsessing about food is common in kids with Fetal alcohol sydnrome...I get it. But I am tired of squeezing all the food I buy into a lock box. I am tired of having to lock up my food. I am tired of not being able to tell the kids to just go get a granola bar. I am tired.......I am simply, plainly tired.
I love him with all my heart. I know that no matter how hard it is to parent Matthew, it has to be that much harder to be Matthew. However, I am tired, and would like 1 day that goes back to when life was easy. When I could trust him and not always think he is up to something. One day when I am proven wrong that his goodness is not for another purpose.....One easy day. One nice note from the teacher that follows with a good day at home.
And to top off all of this....David has started his seizure gag/cough....please make this seizure cycle easy....let the seizure come and go and be a small one. At least this explains David's intensity this weekend and it means that David's seizure will come and he will go back to being stable, but please make it quick. We are going away in 9 days.....I need a peaceful trip, I need to go away feeling somewhat calm so that life is not overwhelming before we get to Disney.
one calm day, really if I can get that, I promise it will be enough....but is there really a way to get 1 whole calm day? maybe I should ask for 1 calm hour.........1 calm minute????
I had a pretty good inventory in my head of what to be on the lookout for- I knew he would try to sneak the cookies and likely the crackers so I checked the location of those items. He put some of his favorite foods in a cabinet because "he forgot those go in the lockbox" and I found all of those and put them in the lock box.
But I forgot I bought 2 boxes of cereal. I had the box i bought for David, but I forgot I bought LIFE cereal.....it wasn't on my radar. I forgot to look to make sure it was put away. I spent a relaxing night at home watching tv and hanging out. All was good until I headed upstairs to bed and there in plain sight was the LIFE cereal- an opened box right next to Matthew's bed.
This means he was able to find the box, hide it upstairs somewhere I wouldnt find it, and then he was quiet enough about what he was doing so I wouldn't hear him open the box. Had he stayed awake long enough to put the box away, he could have gotten away with it and had the box for days until i noticed an influx of crumbs.
Sure, there were signs, he asked where I was when I came downstairs after putting them to bed- but this is not totally unusual. He went to bed without a fight...also not unheard of. He didnt say goodnight 15 times- strange, but not so strange that it alerted me. He didnt tease Jacob after I tucked them in-this was the most odd, but again, not so odd that I forgot to notice him NOT teasing Jacob.
Seriously, how can he put all of this together and have me not notice? Why does he put so much energy into sneaking a box of cereal upstairs and hiding it?
I know his body must hunger for the food- but he eats more than anyone needs. I know scavenging for food and obsessing about food is common in kids with Fetal alcohol sydnrome...I get it. But I am tired of squeezing all the food I buy into a lock box. I am tired of having to lock up my food. I am tired of not being able to tell the kids to just go get a granola bar. I am tired.......I am simply, plainly tired.
I love him with all my heart. I know that no matter how hard it is to parent Matthew, it has to be that much harder to be Matthew. However, I am tired, and would like 1 day that goes back to when life was easy. When I could trust him and not always think he is up to something. One day when I am proven wrong that his goodness is not for another purpose.....One easy day. One nice note from the teacher that follows with a good day at home.
And to top off all of this....David has started his seizure gag/cough....please make this seizure cycle easy....let the seizure come and go and be a small one. At least this explains David's intensity this weekend and it means that David's seizure will come and he will go back to being stable, but please make it quick. We are going away in 9 days.....I need a peaceful trip, I need to go away feeling somewhat calm so that life is not overwhelming before we get to Disney.
one calm day, really if I can get that, I promise it will be enough....but is there really a way to get 1 whole calm day? maybe I should ask for 1 calm hour.........1 calm minute????
Tuesday, November 23, 2010
David seizure free and ready to conquer the world
David's seizures are complex, hard to identify and at times questionable. I have said to every doctor and I readily maintain- david may or may not have seizures. David may or may not have a disorder that has a name as of right now in the medical community. All I can do is identify the "davidisms" describe them to doctors and hope that some time in the near future we get a diagnosis that identifies what is wrong and maybe a hint towards a cure.
Now that said, I am pretty confident David has seizures- they may not all be visible on his EEG , but as I have recently watched 2 other children as they were having seizures, I am not sure that they could look more Davidlike in their presentation. The far away look, the confused stare, the empty eyes.....these other children looked just like David when he is having a seizure.
Not only that, but currently David is thriving! He is excelling! He is doing amazing things, things I have waited years for! And, low and behold, nothing is happening that I have any medical concerns about. He is not having anything that comes close to looking like a seizure. His brain is calm, his behavior is very well controlled, he appears to be at peace.
He has learned to identify some sight words. He can almost write his whole name. I have received 2 emails from his teacher just to tell me how great he is doing.
he can draw me a picture- complete with sun, grass, clouds and a house. He can "read" me a few books that we have. Today he pointed out the word "to" in a book. He recognized it because of the "t" sound.
This month is amazing. His brain is at peace.
I cannot tell you what David has.....I can only describe what I see.....but for now I can say comfortably that David's brain is quiet.....he is ready for learning....he is loving the experience of learning.....and he is feeling good!
And I am loving every single minute i have watching my guy blossom!!!!
Now that said, I am pretty confident David has seizures- they may not all be visible on his EEG , but as I have recently watched 2 other children as they were having seizures, I am not sure that they could look more Davidlike in their presentation. The far away look, the confused stare, the empty eyes.....these other children looked just like David when he is having a seizure.
Not only that, but currently David is thriving! He is excelling! He is doing amazing things, things I have waited years for! And, low and behold, nothing is happening that I have any medical concerns about. He is not having anything that comes close to looking like a seizure. His brain is calm, his behavior is very well controlled, he appears to be at peace.
He has learned to identify some sight words. He can almost write his whole name. I have received 2 emails from his teacher just to tell me how great he is doing.
he can draw me a picture- complete with sun, grass, clouds and a house. He can "read" me a few books that we have. Today he pointed out the word "to" in a book. He recognized it because of the "t" sound.
This month is amazing. His brain is at peace.
I cannot tell you what David has.....I can only describe what I see.....but for now I can say comfortably that David's brain is quiet.....he is ready for learning....he is loving the experience of learning.....and he is feeling good!
And I am loving every single minute i have watching my guy blossom!!!!
Subscribe to:
Posts (Atom)