Today started out like any other morning. My alarm going off in my ear at 5am. Why 5am? That way I can shower, put my face on and get dressed before the twinadoes demand breakfast. On some morning's G wakes me up well before 5am, ready to start his day.
We do our usual, change diapers, get them dressed, feed them breakfast, break up some pre-school fights which are normally over something life shattering like someone has the wrong cup or L stole something from G, administer medications, put everyone's shoes on, and we're out the door. At least we try to be. On a normal day, first I bring L to the car, then G to the car, then have to run back in to grab backpacks (an essential folder holder for any preschooler)and grab my coffee, chugging it on the way to school all while trying not to spill it down the front of my shirt, while L is in the back yelling "OH NO!" because he intentionally took his shoes off and then cries because he doesn't have his shoes on, while G is either shrieking, flapping, crying or eating his fingers.
Although it takes us 15 minutes to get everyone in the car, we get to school in 8 minutes, 9 if the older woman with bright white hair is walking her bazillion dogs (I think they are really walking her), so we have to stop so we don't hit her or one of the bazillion dogs. We finally get to school, thank goodness the handicap spot it open (I'm always amazed at how many non handicapped people park there...in a school...for kids with disabilities.), which also happens to be the furthest spot from the doors (still makes me confused every morning). I get L out of the car, he fights with me because he wants to take the entire contents of the car into school with him and I tell him he can't so he cries. He gets over it and gets out of the car. Then he wants me to carry him, so I carry him to the other side of the car to get G out. G is crying, like he does every morning when we make the turn into school, I try getting him out of the car while being hit. kicked and yelled at. Finally get him out, all of us walk towards the school, G throws himself on the ground and refuses to walk, all while trying to lick the car in front of him (gross!). Pick him up and carry said child, other child notices and wants to be carried too. Finally make it to the doors while carrying about 40 pounds in each arm, plus 2 backpaks while they're both flailing like fish out of water.
We finally make it in the building. L runs to his classroom, G throws himself on the ground. It takes the Principle, myself and one of the TA's to get him to go into the classroom. Once in the classroom, L runs in circles, G throws himself back on the floor while being bribed to wash his hands so he can eat his banana. Put his harness vest on him, wash his hands, seat belt him into special chair, eats banana in 2.3 seconds and then reads a book. I end up sweating my make off, and my good hair day turns into the drowned rat look, eyeliner smudged on my face and ready for a nap. I start what should be my 8 minutes drive home, but realize I have to run errands, looking like I just got out of a sauna when it's really only 40 degrees out. Once I see our neighborhood and our cute house sitting on the corner, I feel like the gates of heaven just opened and I run in wanting to collapse on the couch, but realize there are two furry beasts begging me to take them on a walk. Ah...and it's only Monday.
Monday, November 3, 2014
Friday, October 10, 2014
Dear Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else...please go away.....
Dear Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with,
Please go away, just for a month, week, day, oh heck, I'll even take an hour! Don't get me wrong, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, you have made my children into the strong, amazing, artistic, little human beings who are full of love and giggles.
That doesn't mean that I don't ever think about what they would be like if they were just typical little boys with typical little friends in a typical little school, eating typical little human food without, on typical little playgrounds playing with typical playground equipment all while convulsing, shaking, screeching, kicking, hitting, throwing things, throwing themselves, meltdowns that last hours over nothing at all, hives, and all that other fun stuff we deal with on a day to day basis.
We love all of our therapists and wouldn't change them for the world, they have become friends, family and show their true love and dedication to G&L...that doesn't mean we haven't dreamt (is that even a real word?) of a life with no therapy, running to specialists, blood labs, special needs equipment appointments, etc. My biggest decision used to be which shoes to wear or which shirt my boobs looked better in. Now I have to make decisions everyday that affect G&L's entire life. The Hubs and I always joke around that G might live in our basement one day so we need to move into a house with a basement. We joke about it because we realize it could very well be our reality one day.
While we're on it? Why do I keep saying typical and not normal? My kids ARE normal. Normal for them, and normal to us. What is normal? Everyone has their own sense of normal. What's normal for my life, isn't he next persons normal. It's normal for me to want to wear hot pink and leopard print, it's normal for my friend JSM to wear all back, it's normal for my friend GWB to have red hair, It's normal for my friend JAN to have curly hair. Autism and everything else is our normal, but sometimes it would be nice to have someone else's normal for a month, week, day or an hour.
So, like I was saying, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, has made our boys who they are, but I often wonder who they would be if the world didn't consider them as little boys with special needs, but typical little boys who have lots of love, giggles and smiles to share.
Signed,
One exhausted mama
Please go away, just for a month, week, day, oh heck, I'll even take an hour! Don't get me wrong, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, you have made my children into the strong, amazing, artistic, little human beings who are full of love and giggles.
That doesn't mean that I don't ever think about what they would be like if they were just typical little boys with typical little friends in a typical little school, eating typical little human food without, on typical little playgrounds playing with typical playground equipment all while convulsing, shaking, screeching, kicking, hitting, throwing things, throwing themselves, meltdowns that last hours over nothing at all, hives, and all that other fun stuff we deal with on a day to day basis.
We love all of our therapists and wouldn't change them for the world, they have become friends, family and show their true love and dedication to G&L...that doesn't mean we haven't dreamt (is that even a real word?) of a life with no therapy, running to specialists, blood labs, special needs equipment appointments, etc. My biggest decision used to be which shoes to wear or which shirt my boobs looked better in. Now I have to make decisions everyday that affect G&L's entire life. The Hubs and I always joke around that G might live in our basement one day so we need to move into a house with a basement. We joke about it because we realize it could very well be our reality one day.
While we're on it? Why do I keep saying typical and not normal? My kids ARE normal. Normal for them, and normal to us. What is normal? Everyone has their own sense of normal. What's normal for my life, isn't he next persons normal. It's normal for me to want to wear hot pink and leopard print, it's normal for my friend JSM to wear all back, it's normal for my friend GWB to have red hair, It's normal for my friend JAN to have curly hair. Autism and everything else is our normal, but sometimes it would be nice to have someone else's normal for a month, week, day or an hour.
So, like I was saying, Autism, Epilepsy, 15q11.2, Mastocytosis and whatever else we've been diagnosed with, has made our boys who they are, but I often wonder who they would be if the world didn't consider them as little boys with special needs, but typical little boys who have lots of love, giggles and smiles to share.
Signed,
One exhausted mama
Thursday, September 25, 2014
I've Been A Bad, Bad Blogger
I just noticed after a friend pointed it out, that this is my one year blog anniversary. My last post was May 8th. I didn't forget about my blog, life took over. The Hubs has been deployed, the boys have turned into three year olds, who may I add everyone warns you about the terrible two's....no one ever warns you about the terrorsit threes!!! Good Lord these boys are testing my patience.
A little update...OK, so it will be a long update. G&L were in summer school all summer. It was only half day, but it was better than nothing. It helped them stay in the groove of school. We also took them to the beach, Sea World and some local places. They LOVED the beach! The hubs and I got to go away for the night and headed to the coast. We fell in love with a little beach town and are trying to make it our mission to move there. Surprisingly for a little beach town they have some amazing Autism resources and special programs for the boys, which besides the hubs having a job, is our top priority.
The new school year has been off to a great start. The boys are doing well and love their teachers. Two of them are the same teachers from last year, which I think has helped with their transition. L has become a talking MACHINE! One day he came up to me and said out of the blue, "Hiya Mama!" I about fell over! A lot of his speech is repeating what he hears, and then then turns it into his own sentence, but I'll take it! Sensory wise, he still has issues but we've seen so much improvement! We just switched to a new OT, so fingers crossed it goes well. L is also a ladies man! He loves the ladies, young and old.
G has made some progress. It's been a slow progress, but progress is progress in my book! He now knows most of his animals and the sounds that go with them. He's definitely become a stubborn little boy! I think his stubbornness and drive to want to do things on his own more and more, will help in the long run. He's a boy who knows what he wants and goes after it, or throws himself on the floor and screams til we can figure out what he's after so we can help him. He still has his basic food group of cream cheese, goldfish crackers, banana's, grapes and blueberries.
Both boys have started horse therapy! G jumped on the horse like he's been doing it his entire life...you know, all three years of it. L was a little but more apprehensive but once he was on there he was loving it! I was so proud of both of them for trying something new. The hardest part was trying to get them to wear the riding helmets. After we won that battle it was smooth sailing. Here they are on their horses!
Although I normally keep this blog about the boys, I just have to share that this mama bear just learned how to shoot a gun, so watch out! I was terrified at first, I had never even touched a gun! Thanks to my awesome friend M and a nice man at the range, they both made me confident enough to try it. I seriously loved it! It was empowering just to know, that I could do it, and it wasn't as terrifying as I thought it would be. Do I want a gun in the house? No. I'm not ready for that, I don't know if I ever will be, but at least I know I'm not scared of them anymore, and I know how to handle one.
That's Me!
(Real women shoot in flip flops!)
My goal for the next few months, for all three of my bloggers fans, (Hi Mom, Dad and Sissypants) is too try to keep up with this thing. I started it for a reason, and I hate that I let it go. Gotta follow through Yo!
A little update...OK, so it will be a long update. G&L were in summer school all summer. It was only half day, but it was better than nothing. It helped them stay in the groove of school. We also took them to the beach, Sea World and some local places. They LOVED the beach! The hubs and I got to go away for the night and headed to the coast. We fell in love with a little beach town and are trying to make it our mission to move there. Surprisingly for a little beach town they have some amazing Autism resources and special programs for the boys, which besides the hubs having a job, is our top priority.
The new school year has been off to a great start. The boys are doing well and love their teachers. Two of them are the same teachers from last year, which I think has helped with their transition. L has become a talking MACHINE! One day he came up to me and said out of the blue, "Hiya Mama!" I about fell over! A lot of his speech is repeating what he hears, and then then turns it into his own sentence, but I'll take it! Sensory wise, he still has issues but we've seen so much improvement! We just switched to a new OT, so fingers crossed it goes well. L is also a ladies man! He loves the ladies, young and old.
G has made some progress. It's been a slow progress, but progress is progress in my book! He now knows most of his animals and the sounds that go with them. He's definitely become a stubborn little boy! I think his stubbornness and drive to want to do things on his own more and more, will help in the long run. He's a boy who knows what he wants and goes after it, or throws himself on the floor and screams til we can figure out what he's after so we can help him. He still has his basic food group of cream cheese, goldfish crackers, banana's, grapes and blueberries.
Both boys have started horse therapy! G jumped on the horse like he's been doing it his entire life...you know, all three years of it. L was a little but more apprehensive but once he was on there he was loving it! I was so proud of both of them for trying something new. The hardest part was trying to get them to wear the riding helmets. After we won that battle it was smooth sailing. Here they are on their horses!
(Real women shoot in flip flops!)
My goal for the next few months, for all three of my bloggers fans, (Hi Mom, Dad and Sissypants) is too try to keep up with this thing. I started it for a reason, and I hate that I let it go. Gotta follow through Yo!
Thursday, May 8, 2014
By Far, The Best Mother's Day EVER!
With Mother's Day approaching this weekend, I've been pretty bummed that the hubs won't be home for it, but today, the boys gave me the best Mother's Day (a bit early) ever! I always dreamed of having a fridge full of artwork and a slew of art projects around the house that I always wanted to do with my kids. When we struggled with infertility, I was afraid my dream my never come true. Then when we had the boys I had grand ideas of all the things I was going to do with them. Then, Autism hit. All the projects I had planned never turned out or there would be a meltdown due to mess hands or not understanding what to do.
Today when I picked they boys up from school the teacher handed me birdhouses the boys had painted, hand prints and a pictures they drew all in a cute foam frame. The teacher told me she knows it's not as fancy as other classes but they do projects based on their skills. It could have been a piece of paper with a line on it and I would have been happy. Right now I have a fridge full of crazy drawings and finger paintings with two little bird houses sitting on my windowsill. I've always wanted jewelry, vacations and the big things for gifts (just ask the hubs), but this right here is what it's all about. As I sit and stare at it, I'm just amazed, that my two little amazing boys did this. The boys that just a few months ago would have a 3 hour melt down if something got on their hands, or they fell, or got dirty. Even though we have so many hard, challenging days, it's things like this that make it all worth it. The Dr.'s, the therapies, the tears, it's worth every second for moments like this. This right here is what it's all about.
Today when I picked they boys up from school the teacher handed me birdhouses the boys had painted, hand prints and a pictures they drew all in a cute foam frame. The teacher told me she knows it's not as fancy as other classes but they do projects based on their skills. It could have been a piece of paper with a line on it and I would have been happy. Right now I have a fridge full of crazy drawings and finger paintings with two little bird houses sitting on my windowsill. I've always wanted jewelry, vacations and the big things for gifts (just ask the hubs), but this right here is what it's all about. As I sit and stare at it, I'm just amazed, that my two little amazing boys did this. The boys that just a few months ago would have a 3 hour melt down if something got on their hands, or they fell, or got dirty. Even though we have so many hard, challenging days, it's things like this that make it all worth it. The Dr.'s, the therapies, the tears, it's worth every second for moments like this. This right here is what it's all about.
Sunday, May 4, 2014
The Day I Realized I Can't Do It On My Own
I think as parents, regardless if your children have Autism or some other disability, you have that one point where you think you just can't go on for another minute. I"m currently the VP of our local Mom of Multiples group, which has allowed me to meet so many strong, amazing women, that I otherwise may not have met. There are many members in our group who serve in the military or have a spouse in the military, leaving us to often running the household on our own very often.
While talking to a friend this evening from the multiples group, we were sharing things we do to make it through. I used to be the, "No, I don't want or need any help," person. Now I'm the, "YES!! Please help me person!" I've finally started to admit to others that I have a secret. Reguardless what others think, I am not super woman. I'm damn tired. G&L hardly sleep, they scream yell, meltdown and make me question my sanity. I remembered the first time I realized I need to say, "Yes, I'll take your help."
Last summer I signed the boys up for a gymnastics class with some other friends. I don't know what made me think this would be the best thing ever. I have to say it was 99% awful! L would run in circles and then go back to screaming, sometimes crying, G would either hide in a tunnel somewhere or hang on the door trying to leave. Then there was that one day. We got there a little early (big mistake) the boys didn't and still don't understand the concept of waiting, so they were screaming and crying and hitting me because I wouldn't let them run a muck while the other class was still going on. I literately sat down in the middle of the gym, in front of complete strangers and just started crying. I couldn't keep it in. I tried. The boys were just diagnosed with Autism, the hubs was deployed and I just wanted to hit the pause button. What started out as teary eyes, turned into the ugly cry right there, in front of a bunch of moms and two years olds that I didn't know. One sweet mom came up to me and said, "It's OK, we all have these days." It was that day, that I decided if someone asks me if I need help, and I do, I will swallow my pride and accept it. Once I made that deal with myself things got a little easier. Autism is a Bitch. If people want to help to make our lives a little better or just offer some kind words, who am I to stop them. I sometimes still say, "No Thank You" but then regret it minutes later while I have two children throwing themselves on the sidewalk having a meltdown. Today a friend picked up some diapers for me. Although it may not seem huge to some, G&L were having a horrible stimming day today, and the thought of bringing them in public to get stared at and play 20 questions with strangers wasn't my idea of fun. A saved the day by bring diapers and goldfish!
My point is, as parents I think we often want everyone to think we can do it all, that we are unstoppable. Well, I'll tell you what this mama, knows she can't do it all alone, but she can do it with the help of her awesome friends.
While talking to a friend this evening from the multiples group, we were sharing things we do to make it through. I used to be the, "No, I don't want or need any help," person. Now I'm the, "YES!! Please help me person!" I've finally started to admit to others that I have a secret. Reguardless what others think, I am not super woman. I'm damn tired. G&L hardly sleep, they scream yell, meltdown and make me question my sanity. I remembered the first time I realized I need to say, "Yes, I'll take your help."
Last summer I signed the boys up for a gymnastics class with some other friends. I don't know what made me think this would be the best thing ever. I have to say it was 99% awful! L would run in circles and then go back to screaming, sometimes crying, G would either hide in a tunnel somewhere or hang on the door trying to leave. Then there was that one day. We got there a little early (big mistake) the boys didn't and still don't understand the concept of waiting, so they were screaming and crying and hitting me because I wouldn't let them run a muck while the other class was still going on. I literately sat down in the middle of the gym, in front of complete strangers and just started crying. I couldn't keep it in. I tried. The boys were just diagnosed with Autism, the hubs was deployed and I just wanted to hit the pause button. What started out as teary eyes, turned into the ugly cry right there, in front of a bunch of moms and two years olds that I didn't know. One sweet mom came up to me and said, "It's OK, we all have these days." It was that day, that I decided if someone asks me if I need help, and I do, I will swallow my pride and accept it. Once I made that deal with myself things got a little easier. Autism is a Bitch. If people want to help to make our lives a little better or just offer some kind words, who am I to stop them. I sometimes still say, "No Thank You" but then regret it minutes later while I have two children throwing themselves on the sidewalk having a meltdown. Today a friend picked up some diapers for me. Although it may not seem huge to some, G&L were having a horrible stimming day today, and the thought of bringing them in public to get stared at and play 20 questions with strangers wasn't my idea of fun. A saved the day by bring diapers and goldfish!
My point is, as parents I think we often want everyone to think we can do it all, that we are unstoppable. Well, I'll tell you what this mama, knows she can't do it all alone, but she can do it with the help of her awesome friends.
This Showed Up in My Time Hop Today.
I had forgotten all about the first time I read the poem, "Welcome To Holland." It describes so well what I was feeling at the time, and still am. I thought I would share it here.
Welcome to Holland
Written by Emily Perl Kingsley (in 1987)
I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...
When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.
After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.
But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.
So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Welcome to Holland
Written by Emily Perl Kingsley (in 1987)
I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...
When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.
After months of anticipation, the day finally arrives. You pack your bag and off you go. Several hours later the plane lands. The stewardess comes in and says, 'Welcome to Holland'. 'Holland? ' you say. 'What do you mean Holland? I signed up for Italy! ! ! I am supposed to be in Italy. All my life I have dreamed of going to Italy! '.
But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.
So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Saturday, May 3, 2014
Where Did April Go?
I've been a super slacker on keeping up with my blog. Sorry to all my fans...all two of you, mom and dad ;)
There has been so much going on! Last weekend we had our Autism Walk! It was such a nice spring day for it. Our team looked super cute in our Autism shirts, socks and headbands. We totally rocked it. G&L did excellent at the walk. Much better then when we tried the March of Dimes walk a few weeks prior. At the Autism walk, there were no loud speakers, music blasting etc. It was perfect for them. The one thing I enjoy most about these walks is the sense of community. So many times we feel like outsiders because our family doesn't fit into the, "norm." My children flap, scream, screech, meltdown, run away, twitch, and most of the time live in their own world. When we go to events like this, we fit right in, we get no strange looks and rude comments. We can all be ourselves and it's, "normal." I'm not really sure what normal is considered anymore. The flapping, screaming, screeching, meltdowns, running away and twitching is our normal. I'm so grateful for the friends that come out to walk with us and to all the people that donated to our team. We came in 4th place for our personal goal, and were in the top 8 for our team. Not to shabby! There were a few team members that couldn't make it last minute due to sick kiddo's, but we know they were there in spirit.
The boys started swim lessons this week. G is a natural. I'm pretty sure he'll be on the Special Olympics swim team one day. L on the hand may do better at cross country, since he loves to run. He wasn't too keen on the pool. I think the vastness of it was too much for him. I think another month or so and he'll be just like Nemo, minus having his mother eaten by a shark (we can only hope). He held onto the swim instructor for dear life! G on the other hand was trying to swim on his own.
Things have been going great with school! We couldn't ask for more dedicated and loving teachers. They really care about the boys and love them. We're really lucky to have such a great program for them here. L has come such a long way since starting school. He's saying more and more words. It's pretty amazing. G still isn't speaking much then the saying "bubble" and "thank you" but he's figuring out other way to communicate. The boys just got into the extended school year program. It's only four days a week and for half a day, but it's better then nothing. They'll rock it as usual! Autism can't beat my boys down...or epilepsy or SPD, or Masto...I can go on forever here!
Until I have time to write again my lovely fans (cough, cough, mom and dad!).
There has been so much going on! Last weekend we had our Autism Walk! It was such a nice spring day for it. Our team looked super cute in our Autism shirts, socks and headbands. We totally rocked it. G&L did excellent at the walk. Much better then when we tried the March of Dimes walk a few weeks prior. At the Autism walk, there were no loud speakers, music blasting etc. It was perfect for them. The one thing I enjoy most about these walks is the sense of community. So many times we feel like outsiders because our family doesn't fit into the, "norm." My children flap, scream, screech, meltdown, run away, twitch, and most of the time live in their own world. When we go to events like this, we fit right in, we get no strange looks and rude comments. We can all be ourselves and it's, "normal." I'm not really sure what normal is considered anymore. The flapping, screaming, screeching, meltdowns, running away and twitching is our normal. I'm so grateful for the friends that come out to walk with us and to all the people that donated to our team. We came in 4th place for our personal goal, and were in the top 8 for our team. Not to shabby! There were a few team members that couldn't make it last minute due to sick kiddo's, but we know they were there in spirit.
Team Thompson Twins
GBW showing off her headband
Me with G&L
Until I have time to write again my lovely fans (cough, cough, mom and dad!).
Tuesday, April 15, 2014
Spring Break Is Not What It Used To Be!
Yesterday we spent the afternoon at Children's for G's neurology appointment. It went well, we get to go for another EEG soon. Oh joy! L has turned into a talking machine! He is like a sponge! Everything I say, he repeats. It's pretty cool if you ask me! I really need to start watching my potty mouth. I believe he may have repeated and F bomb. Whoops! Live and learn! Although G still can't talk, he is finding other way to communicate with us. It's pretty cool. I can't imagine the frustration of wanting to say something but not being able to get it out. The boys are LOVING school! Some afternoons when I go to pick them up they don't want to leave. Other days they can't get out the door fast enough. We are lucky that they have amazing teachers that care about them. We just got news that the hubs will be gone another month. BOOOOO! We were so looking forward to him coming home. The boys have changed so much in the time he's been away.
Last weekend we had the March of Dimes walk. Team FAMM did amazing and raised $4000 in a month. Imagine what we can do in more time! It's was a awful for the boys. we ended up leaving before the walk even started. I think between the loud noise, lots of people, the heat, and many other factors it was to overstimulating for them. Needless to say, was ran back to the car, all three of us crying, and hightailed it out of there!
Today we went to Sea and Explore. It's a therapy place but they open up two hours a day for free play. The boys loved it! The therapists that work there are amazing and the boys had so much fun. We will definitely be going back! It was a bonus that we were the only ones there so G&L had the run of the place. Now they're have a lovely snooze and then we have to go pick our sick dog up from the vet. Poor girl has been throwing up and won't eat.
Cheers to Spring Break!
PS...Being an adult is overrated!
Saturday, March 29, 2014
Why I support Autism Speaks.
As we approach April 2nd, and the "Light It Up Blue" campaign from Autism Speaks I feel I need to share our story, as too why we support it. I know there are many that do not, and they are entitled to their own opinion. This is just my view, as a mom to two amazing, smart boys with Autism.
To start, if one person asks me to educate them about Autism beause of Light it UP Blue and World Autism Day, then to me, it's a success. Secondly, for our family, Autism Speaks has helped us first hand. When the boys were first diagnosed with Autism almost a year ago, we felt lost, defeated, and like we were the worst parents in the world. G&L we diagnosed as moderate to severe, we were given suggestions on what to do as far as therapy, and then sent on our way. What do we do with all this information? Who do we turn too? I started researching on line and came across Autism Speaks.
After I wrote down a list of things to ask, I took the plunge and gave them ( Autism Speaks) a call. The person I spoke too, gave me a ton of information and was able to point us in a direction and helped us get started. We were given phone number to call that could help us locally, different therapies, and most of all, this woman listened to me cry for about an hour. To this day, I still speak to this woman and she checks in to see how the boys are doing. Although we have never met, I consider her a friend, she was there to help us, when we felt lost. Now, a year later, I am stronger, my husband is stronger, and most importantly, G&L are stronger and doing amazing things.
Where does all the money go? Last year while I was fundraising for the March of Dimes people were boycotting, saying they only get $.10 on the dollar and that was why it was called March of Dimes. that is false, as is a lot of things that are spread about non profit organizations. You can look up just about any organization online and there will be good things said, as well as bad things, and many things that contradict each other.
If I can help one person who is newly diagnosed, or educate one person, or help one family get the care they need to give their loved one with Autism the best life possible and the best services, I'm going to do it.
You can agree with me, or disagree with me, we all have our opinions. My views are coming with my personal experience on how Autism Speaks helped my family. I will "Light it Up Blue" and I will walk with pride on April 26th to raise money and awareness. Most importantly I will continue to love my children for everything they are and everything they will become. They're going places in this world and I am honored that I am here to be by their side and chosen to be their mother.
To start, if one person asks me to educate them about Autism beause of Light it UP Blue and World Autism Day, then to me, it's a success. Secondly, for our family, Autism Speaks has helped us first hand. When the boys were first diagnosed with Autism almost a year ago, we felt lost, defeated, and like we were the worst parents in the world. G&L we diagnosed as moderate to severe, we were given suggestions on what to do as far as therapy, and then sent on our way. What do we do with all this information? Who do we turn too? I started researching on line and came across Autism Speaks.
After I wrote down a list of things to ask, I took the plunge and gave them ( Autism Speaks) a call. The person I spoke too, gave me a ton of information and was able to point us in a direction and helped us get started. We were given phone number to call that could help us locally, different therapies, and most of all, this woman listened to me cry for about an hour. To this day, I still speak to this woman and she checks in to see how the boys are doing. Although we have never met, I consider her a friend, she was there to help us, when we felt lost. Now, a year later, I am stronger, my husband is stronger, and most importantly, G&L are stronger and doing amazing things.
Where does all the money go? Last year while I was fundraising for the March of Dimes people were boycotting, saying they only get $.10 on the dollar and that was why it was called March of Dimes. that is false, as is a lot of things that are spread about non profit organizations. You can look up just about any organization online and there will be good things said, as well as bad things, and many things that contradict each other.
If I can help one person who is newly diagnosed, or educate one person, or help one family get the care they need to give their loved one with Autism the best life possible and the best services, I'm going to do it.
You can agree with me, or disagree with me, we all have our opinions. My views are coming with my personal experience on how Autism Speaks helped my family. I will "Light it Up Blue" and I will walk with pride on April 26th to raise money and awareness. Most importantly I will continue to love my children for everything they are and everything they will become. They're going places in this world and I am honored that I am here to be by their side and chosen to be their mother.
Saturday, March 22, 2014
Yes, I Would Take It All Away If I Could!!
It's been so long since I've had time to write. With the hubs being gone, I barely get a second to come up for air. The boys have been sick for the past month, I'm fighting a staph infection and we're all pretty much exhausted!
Today we went to a birthday party for some twin friends third birthday. The boys had a great time! We got out of there just before them meltdowns so it was perfect timing! The awesome LC came with us to help with the boys. I really don't think I could have done it without her. She is amazing with the boys, and they love her so much. She's one of the few people we trust with G&L. It's an added bonus that she teaches kids with Autism.
As World Autism Day is approaching (April 2nd)I've been seeing a ton of things online boycotting it saying it's not about finding a cure it's about acceptance. World Autism Day brings awareness which helps with acceptance. I've also read tons of blogs and posts from people saying it's not a disease so don't try to cure it. I've said this before and I'll say it again. I know many disagree with me but if I could take G&L's Autism away, I would in a heart beat. It kills me to see them struggle, to see friends with babies that are only one, passing milestones that we dream of them reaching some day. I look at it like this, G has epilepsy. He takes medicine to help reduce his seizures. If I could take his seizures away, I would in a heart beat. If I could take his Autism away I would in a heart beat. If I could take away L's SVT and Mastocytosis, would I? You bet! The same way I would want to take away his Autism. Why would any parent, or any human being for that matter, what to see a person, especially their child struggle to talk, communicate, walk, handle emotions, etc. I know I can't take their Autism away, but I pray that one day they can fully communicate, be independent and maybe even have a job. I have the same dreams for my children that any parent does. I shouldn't be ostracized for wanting my children to be nuerotypical! No parent says, "Gosh, I really hope my child has Autism!" Just because they have it, makes me no different. I want the best for my kids.
With all that being said, on April 2nd....LIGHT IT UP BLUE! Wear a blue shirt, put a blue light bulb on your front porch, heck...eat a blue cupcake! Autism is real, Inspire people, Educate people, Make people aware! This girl will be decked out in blue!
Today we went to a birthday party for some twin friends third birthday. The boys had a great time! We got out of there just before them meltdowns so it was perfect timing! The awesome LC came with us to help with the boys. I really don't think I could have done it without her. She is amazing with the boys, and they love her so much. She's one of the few people we trust with G&L. It's an added bonus that she teaches kids with Autism.
As World Autism Day is approaching (April 2nd)I've been seeing a ton of things online boycotting it saying it's not about finding a cure it's about acceptance. World Autism Day brings awareness which helps with acceptance. I've also read tons of blogs and posts from people saying it's not a disease so don't try to cure it. I've said this before and I'll say it again. I know many disagree with me but if I could take G&L's Autism away, I would in a heart beat. It kills me to see them struggle, to see friends with babies that are only one, passing milestones that we dream of them reaching some day. I look at it like this, G has epilepsy. He takes medicine to help reduce his seizures. If I could take his seizures away, I would in a heart beat. If I could take his Autism away I would in a heart beat. If I could take away L's SVT and Mastocytosis, would I? You bet! The same way I would want to take away his Autism. Why would any parent, or any human being for that matter, what to see a person, especially their child struggle to talk, communicate, walk, handle emotions, etc. I know I can't take their Autism away, but I pray that one day they can fully communicate, be independent and maybe even have a job. I have the same dreams for my children that any parent does. I shouldn't be ostracized for wanting my children to be nuerotypical! No parent says, "Gosh, I really hope my child has Autism!" Just because they have it, makes me no different. I want the best for my kids.
With all that being said, on April 2nd....LIGHT IT UP BLUE! Wear a blue shirt, put a blue light bulb on your front porch, heck...eat a blue cupcake! Autism is real, Inspire people, Educate people, Make people aware! This girl will be decked out in blue!
Tuesday, March 4, 2014
The Magical Place Called School.
For the past week the boys and I have been fighting a beast of a cold. I think we finally might be on the mend! Take two kiddo's with Autism who don't sleep much to begin with, add in a stuffy, runny nose and a cough and what do you have? No sleep for Momma!!! The hubs is on his deployment and the poor guy is sick too! Go home winter, you're drunk!
Yesterday the boys got an early dismissal from school. You know, since it was raining! They also had a delayed opening this morning, which was understandable since we did get some ice tonight. What did that mean for me? Two crazy three year olds bouncing off the walls and screaming since their schedule was thrown off. Ah, the glamorous life of an Autism family. I'm totally that helicopter mom who is never more then three feet away from her children. I was terrified to send them to school even though it's a school for special needs. What if something happened? What if they were upset and I'm the only one who could understand their nonverbal ways? What if they wonder off? What it, what if, what if. Well, let me tell you! The place they call school is what I refer to as this magical place that helps me keep my sanity. I never thought I would feel this way. After being with my boys 24/7 for the last three years, I couldn't imagine them not being with me all.the.time. Well, let me tell you, this magical place takes care of them, teaches them, and loves them for 6.5 hours a day! They love it there! They've made friends with other adorable non verbal kids, they have amazing teachers who love and care for them, and I get some time to myself. I never realized how much I needed this time, until I had it! Holy, mother of Autism! Did I ever need it!
I attempted to potty train L over the weekend. It went as I suspected. NOT GOOD! He could care less about it, but at least our floors got a good cleaning. I put him back in diapers and called it a day. He's wasn't making the connection and I'm not pushing it. When he gets it, he gets it. I think G is going to be in diapers til he's 20. It is, what it is. L's teacher is going to send me some info on potty training non verbal kiddo's with Autism. we'll see how it goes. G just kept watching L pee on himself with a confused look. I think he was just happy it wasn't him!
Stay tuned for our awesome raffle we're holding! Lots of things to auction off so we can raise even more money for our Autism walk!!
Yesterday the boys got an early dismissal from school. You know, since it was raining! They also had a delayed opening this morning, which was understandable since we did get some ice tonight. What did that mean for me? Two crazy three year olds bouncing off the walls and screaming since their schedule was thrown off. Ah, the glamorous life of an Autism family. I'm totally that helicopter mom who is never more then three feet away from her children. I was terrified to send them to school even though it's a school for special needs. What if something happened? What if they were upset and I'm the only one who could understand their nonverbal ways? What if they wonder off? What it, what if, what if. Well, let me tell you! The place they call school is what I refer to as this magical place that helps me keep my sanity. I never thought I would feel this way. After being with my boys 24/7 for the last three years, I couldn't imagine them not being with me all.the.time. Well, let me tell you, this magical place takes care of them, teaches them, and loves them for 6.5 hours a day! They love it there! They've made friends with other adorable non verbal kids, they have amazing teachers who love and care for them, and I get some time to myself. I never realized how much I needed this time, until I had it! Holy, mother of Autism! Did I ever need it!
I attempted to potty train L over the weekend. It went as I suspected. NOT GOOD! He could care less about it, but at least our floors got a good cleaning. I put him back in diapers and called it a day. He's wasn't making the connection and I'm not pushing it. When he gets it, he gets it. I think G is going to be in diapers til he's 20. It is, what it is. L's teacher is going to send me some info on potty training non verbal kiddo's with Autism. we'll see how it goes. G just kept watching L pee on himself with a confused look. I think he was just happy it wasn't him!
Stay tuned for our awesome raffle we're holding! Lots of things to auction off so we can raise even more money for our Autism walk!!
Tuesday, February 25, 2014
Dear Autism, You are a B*tch!
This is a whiny entry. Don't say I didn't warn you. Today I want to give Autism and big FU!
So G&L had a field trip for school today and I was a chaperone. I thought I was going to lose my mind. L did great for about two hours which is really great for him. He just got super tired and started to slow down. Even though he was exhausted he still managed to hold it together.
G was a MANIAC...people (not his class) were staring at him and me, like I was a big A-hole. He kept throwing himself on the floor, screaming, flapping, crying, yelling etc. Anytime I would try to pick him up to comfort him he would hit me in the face. I know he was acting like this because he was way to overstimulated, but it doesn't make it any easier when your in the midst of it. I was a little over zealous and didn't bring his stroller inside(he has a wheel chair stroller which has a compression clip on it, to help him and it's anti tip for when he throws himself). We had to walk about one city block back to the car and he kept throwing himself on the side walk and having a protest. I was pouring sweat by the time I got back to the car. One of his teachers asked if I needed help getting them back to the car, but stupidly, I said No. As G is throwing himself on the sidewalk people were walking by giving me side eye. I may have said, "What? You've never seen a three year old with Autism?" to someone. What the hell is wrong with me? I need to accept peoples help! They are trained to deal with this! I just feel super defeated today. Autism is a bitch. The end.
So G&L had a field trip for school today and I was a chaperone. I thought I was going to lose my mind. L did great for about two hours which is really great for him. He just got super tired and started to slow down. Even though he was exhausted he still managed to hold it together.
G was a MANIAC...people (not his class) were staring at him and me, like I was a big A-hole. He kept throwing himself on the floor, screaming, flapping, crying, yelling etc. Anytime I would try to pick him up to comfort him he would hit me in the face. I know he was acting like this because he was way to overstimulated, but it doesn't make it any easier when your in the midst of it. I was a little over zealous and didn't bring his stroller inside(he has a wheel chair stroller which has a compression clip on it, to help him and it's anti tip for when he throws himself). We had to walk about one city block back to the car and he kept throwing himself on the side walk and having a protest. I was pouring sweat by the time I got back to the car. One of his teachers asked if I needed help getting them back to the car, but stupidly, I said No. As G is throwing himself on the sidewalk people were walking by giving me side eye. I may have said, "What? You've never seen a three year old with Autism?" to someone. What the hell is wrong with me? I need to accept peoples help! They are trained to deal with this! I just feel super defeated today. Autism is a bitch. The end.
Sunday, February 23, 2014
Holy Cow!! I Have Threenagers!!
What a whirlwind of a week it's been! My babies have officially turned three!!! How is this possible? I know people say time flies when you have kids, but it doesn't have to fly this quickly! Even though they are only three, and we try to live in the now, it's so hard not to think about what happens in 20 years? What will they be able to do? Where will they be? We'll save that for day dreaming!
Why else was this week a super big week?!?! G&L started school! Unlike the school we tried with L last year, this is a school that is made just for them, with kids just like them, and teachers that have the resources and education to help them and work with them. It's such a breath of fresh air. There are only 8 kids and 3 teachers! G&L are having a bit of a rough time with transitioning but they're starting to get it. They ordered adaptive seating for G which is awesome for him! They are exhausted from school because they refuse to nap during nap time (can you blame them with all that new stuff around them?), but as soon as they get done with school we start running around for therapies. Such a busy little life they lead for three year olds! I have a meeting with the school PT and their lead teacher on Monday to go over some things for them and to come up with a plan for them in school. Mainly G. G is a big wanderer and needs a bit more attention.
Another big transition is coming up for the boys this week. The hubs is deploying for a few months. Now that they're getting older, I start to worry how it will effect their day to day lives. Especially L since he loves spending time with his daddy. I do notice that when ever the hubs is deployed, L seems to gravitate towards friends husbands. He has a male teacher assistant so maybe that will help him with the transition of daddy not being here.
Here's a picture of our crazy family from G&L's birthday party. This picture makes me laugh because it totally captures us!!
Here's a collage I made for their birthday! G's newborn pics on top, L on the bottom.
Why else was this week a super big week?!?! G&L started school! Unlike the school we tried with L last year, this is a school that is made just for them, with kids just like them, and teachers that have the resources and education to help them and work with them. It's such a breath of fresh air. There are only 8 kids and 3 teachers! G&L are having a bit of a rough time with transitioning but they're starting to get it. They ordered adaptive seating for G which is awesome for him! They are exhausted from school because they refuse to nap during nap time (can you blame them with all that new stuff around them?), but as soon as they get done with school we start running around for therapies. Such a busy little life they lead for three year olds! I have a meeting with the school PT and their lead teacher on Monday to go over some things for them and to come up with a plan for them in school. Mainly G. G is a big wanderer and needs a bit more attention.
Another big transition is coming up for the boys this week. The hubs is deploying for a few months. Now that they're getting older, I start to worry how it will effect their day to day lives. Especially L since he loves spending time with his daddy. I do notice that when ever the hubs is deployed, L seems to gravitate towards friends husbands. He has a male teacher assistant so maybe that will help him with the transition of daddy not being here.
Here's a picture of our crazy family from G&L's birthday party. This picture makes me laugh because it totally captures us!!
Wednesday, February 12, 2014
Walk For Autism - Team Thompson Twins
Autism Statistics:
Every 11 minutes someone is diagnosed with some form of Autism. 1 in 54 boys are diagnosed with Autism while 1 in 252 girls are diagnosed in the United States. Autism affects over 2 million individuals in the U.S. and tens of millions worldwide. Autism is the fastest-growing serious developmental disability in the U.S. and costs a family $60,000 a year on average. G&L are just two people out of many that are affected with Autism.
How can you help? By raising awareness, educate people and be proactive. No matter how prepared you are as a parent, no one ever thinks their child will have Autism. Please help us raise awareness and help in our fight to educate people about Autism and most importantly to help us fight for G&L. Educate! Donate! Join our Team! Just click on the Link below!
http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1084973&lis=0&kntae1084973=C48167EBF9AC4B999BB0628E24CE57EC&supId=400768536&teamName=Thompson%2BTwins
Every 11 minutes someone is diagnosed with some form of Autism. 1 in 54 boys are diagnosed with Autism while 1 in 252 girls are diagnosed in the United States. Autism affects over 2 million individuals in the U.S. and tens of millions worldwide. Autism is the fastest-growing serious developmental disability in the U.S. and costs a family $60,000 a year on average. G&L are just two people out of many that are affected with Autism.
How can you help? By raising awareness, educate people and be proactive. No matter how prepared you are as a parent, no one ever thinks their child will have Autism. Please help us raise awareness and help in our fight to educate people about Autism and most importantly to help us fight for G&L. Educate! Donate! Join our Team! Just click on the Link below!
http://www.walknowforautismspeaks.org/faf/donorReg/donorPledge.asp?ievent=1084973&lis=0&kntae1084973=C48167EBF9AC4B999BB0628E24CE57EC&supId=400768536&teamName=Thompson%2BTwins
Tuesday, February 11, 2014
PARTY TIME!
It's been a while since I last updated. We had the boys IEP meeting earlier in the month. I am happy to say, it went GREAT and we got everything we wanted for them! They IEP team was pretty easy to work with and they weren't the nightmare I had been warned about. Maybe they were warned about me? HAHA! So, the boys are getting tons of services and will be started a special preschool program...NEXT WEEK!!! Hold me! My sister asked me who was going to cry more. I think it's a toss up between me and L. I could be wrong, but I think G will be OK, even though he's the one I'm most worried about leaving. There are only 8 kids in the class including them and 4 teachers. It's so hard to leave my babies! I'm already having major anxiety over it.
Over the weekend we had their third birthday party! Their birthday isn't until next week but the hubs is going on a deployment so we decided to have it a little early so he could be here for it this year. He had to miss their second birthday. We had their party at a Children's museum. We rented it out after hours so we had the place to ourselves. All the kids had a great time and I'm in love with how the cake came out! If anyone in the Fayetteville, NC area needs an awesome cake, I highly recommend Cakes by Carly. She did an amazing job and we will definitely be using her again. She even made little Autism ribbons to put on the pirates. LOVE LOVE LOVE!
The boys did pretty well at their party. L did a wee bit better then G. G had a few meltdowns but he was also exhausted. They both refused to nap that afternoon. I would say it was because they were so excited about their party that evening, but they had no idea about it! I told them all about it, but I'm pretty sure they didn't understand. I think the best moment of the party was when G picked up the phone and screamed, "HEP (help)!!!" into the phone! I guess he wanted to get out of there. We had a professional photographer there so I'll post some pictures when we get them back. I can't wait to see them!
What else made their party so special? Seeing how many people where there because they truly love G&L. Everyone one from family, friends, therapists and their Early Intervention coordinator. We wouldn't be where we are now, with out all of these amazing people. They boys received so many thoughtful gifts to help with their therapies. There are a lot of days we feels so alone in this battle with Autism and isolated from the rest of the world, but on this day we felt loved.
Over the weekend we had their third birthday party! Their birthday isn't until next week but the hubs is going on a deployment so we decided to have it a little early so he could be here for it this year. He had to miss their second birthday. We had their party at a Children's museum. We rented it out after hours so we had the place to ourselves. All the kids had a great time and I'm in love with how the cake came out! If anyone in the Fayetteville, NC area needs an awesome cake, I highly recommend Cakes by Carly. She did an amazing job and we will definitely be using her again. She even made little Autism ribbons to put on the pirates. LOVE LOVE LOVE!
What else made their party so special? Seeing how many people where there because they truly love G&L. Everyone one from family, friends, therapists and their Early Intervention coordinator. We wouldn't be where we are now, with out all of these amazing people. They boys received so many thoughtful gifts to help with their therapies. There are a lot of days we feels so alone in this battle with Autism and isolated from the rest of the world, but on this day we felt loved.
Thursday, January 30, 2014
Snow Apacolypse
It's been a while since I last posted. We've had a busy couple of weeks here. G&L both had colds, and then I got it. Fun times!
The Dr. had to change G's seizure medicine since the one he was on turned him into a beast. I think this one might be working, but I think he's still having some seizures. He goes back to the Dr in two weeks, so we'll see what he says. Poor G. Can't catch a break...ever. Good things he's so freaking cute!! ;)
We had a huge (well, huge for the south), snow storm two days ago. The best part about it was our heat stopped working in the middle of the night! My children turned into icicle people! It's was soooooo cold! Thankfully the repair man was able to make his way out here even though the roads were super icy. That man deserves an award! The same repair man saved us over the summer when our AC stopped working during a heat wave! L gave him a huge hug and forced him to snuggle before he left. Thank goodness the guy has kids or it would have been like one of those moments when a person who hates dogs has your dog begging them for attention and they're just kind of like, "Oh hi, dog, go away now" Yeah, it had the potential to be that kind of moment.
It turns out our dogs love snow and keep wanting to go back out in it. G&L on the other hand, well they are more then happy not to touch it. They like looking at it from inside but aren't too fond of touching it. Maybe one day I'll get them to dive right into it. They're more like their mommy, they would rather a warm day spent in the pool.
Next week we have their IEP meeting. Keep your fingers crossed for us that it all goes smooth and we get everything we want for them! In less then two weeks is their, pirate birthday party!! I have so much to do to get ready for it! I'm pretty sure they have no idea what their birthday is, but I'm really excited for it!
Hope everyone is staying warm and if you live somewhere warm and tropical either send me a plane ticket or send some of the sunshine our way!
The Dr. had to change G's seizure medicine since the one he was on turned him into a beast. I think this one might be working, but I think he's still having some seizures. He goes back to the Dr in two weeks, so we'll see what he says. Poor G. Can't catch a break...ever. Good things he's so freaking cute!! ;)
We had a huge (well, huge for the south), snow storm two days ago. The best part about it was our heat stopped working in the middle of the night! My children turned into icicle people! It's was soooooo cold! Thankfully the repair man was able to make his way out here even though the roads were super icy. That man deserves an award! The same repair man saved us over the summer when our AC stopped working during a heat wave! L gave him a huge hug and forced him to snuggle before he left. Thank goodness the guy has kids or it would have been like one of those moments when a person who hates dogs has your dog begging them for attention and they're just kind of like, "Oh hi, dog, go away now" Yeah, it had the potential to be that kind of moment.
It turns out our dogs love snow and keep wanting to go back out in it. G&L on the other hand, well they are more then happy not to touch it. They like looking at it from inside but aren't too fond of touching it. Maybe one day I'll get them to dive right into it. They're more like their mommy, they would rather a warm day spent in the pool.
Next week we have their IEP meeting. Keep your fingers crossed for us that it all goes smooth and we get everything we want for them! In less then two weeks is their, pirate birthday party!! I have so much to do to get ready for it! I'm pretty sure they have no idea what their birthday is, but I'm really excited for it!
Hope everyone is staying warm and if you live somewhere warm and tropical either send me a plane ticket or send some of the sunshine our way!
Sunday, January 19, 2014
Not a day goes by...
Not a day goes by, that the word, "Autism" isn't always in my head. I think about it while I'm grocery shopping, going to bed, watching movies, talking to people about other things, etc. I think there was an occasion maybe a few months ago at a girls night out that I forgot for a minute. Then, it happened...everyone started talking about their "typical" kids. I love all their kids, I love them like they were my own, but I get jealous!
Why do I get jealous? I get jealous at the funny things your kids say, the games they play, the crafts they make and when I hear them call you momma or dadda. I get jelous that while we're running from therapy appointments to Dr. appointments your going on play dates and shopping. I get jealous that all your kids can go to any preschool you choose, while we have to fight to get two spots in a special needs school...the only one in the county. I'm jealous of your family vacations that we may never be able to take. Have I mentioned that I'm jealous that your kids can eat in a restaurant and eat real food and not throw it at people? G&L were delayed, but that was OK. The specialist kept telling us they would catch up by the time they were two like most preemies. We just kept telling ourselves that two was the magic number. Oh, I guess I need to throw in, that even though I get jealous of friends, I still love them. <3
As two was approaching we knew for sure our adorable little men did not catch up. In fact, we were telling the Dr.'s when they were 1, that we knew they had Autism. We were always told, they just have delays. 18 months came approached, and they grew more concered. We hit the big two! Suddenly, MRI's were ordered, blood tests were taken, more specialist were introduced we learned about genetics and chromosomes and epilepsy and Autism and just about everything else under the son.
I now walk around with a medical notebook about the size of two old school encyclopedia's that contains test results, evaluations, medical papers, research, studies done in other countries and perhaps some coffee stains and cookie crumbs (all that research can make a girl sleepy and hungry).
In just a few short weeks my babies are turning three! I can already see what amazing little boys they are becoming. They work so hard and they don't let anything hold them back. Of course they get tired and cranky and have day that they just don't want to do anything with therapy, but everyone has days like that. Especially toddlers. I still have big dreams for them. A friend asked what could I see them being when they grow up. Even with their disabilities I can see G being and Engineer. He loves to inspect things close up, and figure out how they work. Show this kid some gears and he'll be happy for hours. I can see L being a math genius! This kid loves numbers, math, watches, anything with numbers. He must have gotten that from his dad. The hubs is the one who got me through algebra. Without him, I may have never graduated from college!
So, the gist of this post? I'm not really sure! Just throwing some stuff out there. But to end on a good note, sweet L, would like to sing everyone a bed time story.
Why do I get jealous? I get jealous at the funny things your kids say, the games they play, the crafts they make and when I hear them call you momma or dadda. I get jelous that while we're running from therapy appointments to Dr. appointments your going on play dates and shopping. I get jealous that all your kids can go to any preschool you choose, while we have to fight to get two spots in a special needs school...the only one in the county. I'm jealous of your family vacations that we may never be able to take. Have I mentioned that I'm jealous that your kids can eat in a restaurant and eat real food and not throw it at people? G&L were delayed, but that was OK. The specialist kept telling us they would catch up by the time they were two like most preemies. We just kept telling ourselves that two was the magic number. Oh, I guess I need to throw in, that even though I get jealous of friends, I still love them. <3
As two was approaching we knew for sure our adorable little men did not catch up. In fact, we were telling the Dr.'s when they were 1, that we knew they had Autism. We were always told, they just have delays. 18 months came approached, and they grew more concered. We hit the big two! Suddenly, MRI's were ordered, blood tests were taken, more specialist were introduced we learned about genetics and chromosomes and epilepsy and Autism and just about everything else under the son.
I now walk around with a medical notebook about the size of two old school encyclopedia's that contains test results, evaluations, medical papers, research, studies done in other countries and perhaps some coffee stains and cookie crumbs (all that research can make a girl sleepy and hungry).
In just a few short weeks my babies are turning three! I can already see what amazing little boys they are becoming. They work so hard and they don't let anything hold them back. Of course they get tired and cranky and have day that they just don't want to do anything with therapy, but everyone has days like that. Especially toddlers. I still have big dreams for them. A friend asked what could I see them being when they grow up. Even with their disabilities I can see G being and Engineer. He loves to inspect things close up, and figure out how they work. Show this kid some gears and he'll be happy for hours. I can see L being a math genius! This kid loves numbers, math, watches, anything with numbers. He must have gotten that from his dad. The hubs is the one who got me through algebra. Without him, I may have never graduated from college!
So, the gist of this post? I'm not really sure! Just throwing some stuff out there. But to end on a good note, sweet L, would like to sing everyone a bed time story.
Friday, January 17, 2014
Sweet, Sweet Avonte.
I write this as my eyes fill with tears. Today is a very sad day for the family of Avonte Oquendo. Avonte has Autism and is non verbal. Four months ago he went missing from his school in NY. He walked out in the middle of the day when no one was watching. He was never to be heard from again...until today. Last night a teenage girl spotted some body parts near the water. Police reported there was an arm, leg, torso, jeans and sneakers. They believe it matches sweet Avonte. The news said there should be a police report later to confirm if it is him.
Not a day goes by since this sweet boy went missing that I haven't thought about him. A boy I have never met but feel a connection too since my boys are similar to him. People with Autism often wonder off. If they are nonverbal, they can not ask anyone for help. They can easily get lost, or get taken advantage of. His family sent him to school thinking he was being watched and taken care of. I can't imagine what they must be feeling or how badly their hearts must be aching.
Parents, teachers, friends, family and strangers, we must keep Avonte's spirit alive and fight for him. Children and adults with Autism often can not fight for themselves. We need to make sure nothing like this happens again. It's my worst fear as a parent.
Sweet Avonte, you were loved by so many. We will continue to fight the fight. We will not fail you. RIP
Not a day goes by since this sweet boy went missing that I haven't thought about him. A boy I have never met but feel a connection too since my boys are similar to him. People with Autism often wonder off. If they are nonverbal, they can not ask anyone for help. They can easily get lost, or get taken advantage of. His family sent him to school thinking he was being watched and taken care of. I can't imagine what they must be feeling or how badly their hearts must be aching.
Parents, teachers, friends, family and strangers, we must keep Avonte's spirit alive and fight for him. Children and adults with Autism often can not fight for themselves. We need to make sure nothing like this happens again. It's my worst fear as a parent.
Sweet Avonte, you were loved by so many. We will continue to fight the fight. We will not fail you. RIP
Wednesday, January 15, 2014
To Walk A Day In Our Shoes.
After talking to a friend yesterday, I realized not many people truly understand what it's like to live with two toddlers on the severe end of the Autism spectrum, developmental disabilities, rare diseases and epilepsy. While our house is filled with love and laughter, it's also filled with tons of therapy appointments, doctors, tears, stimming, hitting, kicking, yelling, crying and fear. G&L are awesome and I wouldn't trade them in for anything, but I'm going to be extremely blunt. This is not the life I imagined. I never imagined having to hold my children down so they don't hurt themselves or someone else. I never imagined having weeks filled with therapy, appointments and meetings. I never imagined my children wouldn't be able to say momma or dadda. I never imagined my children having to go to a school for people with Special Needs. I never imagined having to turn down play dates and parties and always having to be the first ones to leave because my children are overstimulated and about to have a meltdown. There are a lot of things throughout life I never imagined. If I could never imagine them, I can't expect friends and loved ones to imagine them.
Why do I turn down play dates?
It's pretty simple, G&L have a hard time being around other children. They love adults and will snuggle with just about any adult in there path, but they don't handle other children well. L had a few select children he likes (such as the W triplets) while G sticks to adults or stay in a corner and plays by himself. They throw things and hit and yell and scream. I break out into a sweat trying to calm them down.
Why are we the first ones to leave birthday parties?
Besides the fact that G&L don't participate in group activities, L can not sit still for more then three seconds. Unless there is somewhere for him to run and be in his own world, he can not handle it. G normally just isn't really sure what's going on around him. He gets confused and sometimes agitated. We've been able to figure out when meltdowns are about to occur and high tail out of there before people have to witness the wrath of G&L and possibly ruin someone's party.
Why do we never go to activities at parks unless the hubs or another adult comes with us?
L is a runner, he is fast and he has no idea of his surroundings. He could get lost in a millisecond. It's my worst fear. G can easily wonder off in the other direction. Although not as fast as L when he sees something he wasn't to check out, he can't stop himself and calling out his name will not stop him, as he doesn't respond to his name. When they are stopped, meltdown ensues. These meltdowns I speak of aren't your normal toddler tantrums. They can last for hours and involve hitting and throwing. It can throw their entire week off and take a lot of work to get them recentered.
Why are we so strict about their schedule?
They thrive on a schedule, as do most with Autism. They know what to expect and what's going to happen next. When their schedule gets thrown off, it throws them for a loop and it can lead to a meltdown. They know we get home from therapy, eat lunch and take a nap. If we happen to do something out of that order, they throw themselves and cry. I truly believe they have an internal clock that lets them know what time they are supposed to do everything.
Why do they do strange things?
It's simple. To them, it's not strange. It feels good. It's called stimming. G stands on his head, screeches in high pitch tones, flaps his arms, laughs when nothing is happening, covers his eyes, twirls and tightens his muscles. He does it when he's excited, scrared, bored, etc. It just makes him feel good and it's comforting to him. L covers his ears, spins in circles, stands on his head, follows lines, jumps, bangs his head and runs up and down the hallway. To him it feels good.
Why don't we take them to restaurants very often?
They have trouble sitting still, G throws food at people and they both have strong food aversions. G more so then L. If you order something and you're sitting next to G, he might start gagging just by looking at your food or smelling it. Worst case scenario...he throws up, and then no one eats.
There you have it. A little look into why we do things the way we do. Even though we stick to schedules and have to avoid certain situations, we still have fun! We find activities they like, and that they can do. Everyday brings something new. As their parents, we are tired, coffee doesn't have the same effect it once did and thankfully the good times outweigh the hard times. Even though I never imagined this life, I wouldn't change it for anything.
Why do I turn down play dates?
It's pretty simple, G&L have a hard time being around other children. They love adults and will snuggle with just about any adult in there path, but they don't handle other children well. L had a few select children he likes (such as the W triplets) while G sticks to adults or stay in a corner and plays by himself. They throw things and hit and yell and scream. I break out into a sweat trying to calm them down.
Why are we the first ones to leave birthday parties?
Besides the fact that G&L don't participate in group activities, L can not sit still for more then three seconds. Unless there is somewhere for him to run and be in his own world, he can not handle it. G normally just isn't really sure what's going on around him. He gets confused and sometimes agitated. We've been able to figure out when meltdowns are about to occur and high tail out of there before people have to witness the wrath of G&L and possibly ruin someone's party.
Why do we never go to activities at parks unless the hubs or another adult comes with us?
L is a runner, he is fast and he has no idea of his surroundings. He could get lost in a millisecond. It's my worst fear. G can easily wonder off in the other direction. Although not as fast as L when he sees something he wasn't to check out, he can't stop himself and calling out his name will not stop him, as he doesn't respond to his name. When they are stopped, meltdown ensues. These meltdowns I speak of aren't your normal toddler tantrums. They can last for hours and involve hitting and throwing. It can throw their entire week off and take a lot of work to get them recentered.
Why are we so strict about their schedule?
They thrive on a schedule, as do most with Autism. They know what to expect and what's going to happen next. When their schedule gets thrown off, it throws them for a loop and it can lead to a meltdown. They know we get home from therapy, eat lunch and take a nap. If we happen to do something out of that order, they throw themselves and cry. I truly believe they have an internal clock that lets them know what time they are supposed to do everything.
Why do they do strange things?
It's simple. To them, it's not strange. It feels good. It's called stimming. G stands on his head, screeches in high pitch tones, flaps his arms, laughs when nothing is happening, covers his eyes, twirls and tightens his muscles. He does it when he's excited, scrared, bored, etc. It just makes him feel good and it's comforting to him. L covers his ears, spins in circles, stands on his head, follows lines, jumps, bangs his head and runs up and down the hallway. To him it feels good.
Why don't we take them to restaurants very often?
They have trouble sitting still, G throws food at people and they both have strong food aversions. G more so then L. If you order something and you're sitting next to G, he might start gagging just by looking at your food or smelling it. Worst case scenario...he throws up, and then no one eats.
There you have it. A little look into why we do things the way we do. Even though we stick to schedules and have to avoid certain situations, we still have fun! We find activities they like, and that they can do. Everyday brings something new. As their parents, we are tired, coffee doesn't have the same effect it once did and thankfully the good times outweigh the hard times. Even though I never imagined this life, I wouldn't change it for anything.
Monday, January 13, 2014
Three Year Olds Are Not For the Faint of Heart.
My little babies, the ones that were holding on for hear life almost three years ago, are turning THREE in a month. Whoever said the two's were "The Terrible Twos," are big, fat, ugly liars! Now that we're approaching the three's, I can say, the threes are a million times worse! The pushing and hitting and tantrums have magnified, add Autism and a lack of communication skills and this momma feel like she's a full time Referee/Lion Tamer/Warden.
G started his seizure medication. I'm thinking this isn't the right one for him. Since he's started taking it, my sweet, laid back little boys has become a moody, cranky and perhaps possessed (but cute) little man. It all started the day after his first dose of medication. Needless to say, I have a call into the neurologist to see if this is normal and to see if we can try another medication. What if his seizures are what made him so calm and this is the new him?!?! We're in for it if that's the case! I've lost count of how many times I've been hit or kicked in the face since he started the medicine. This just isn't my sweet boy. He's also been extra stimmy this week. My poor baby. On a posative note, he now likes "Bob The Builder." When they sing, "Can we build it?" G yells out, "YEAH!!" in his sweet cute little G voice.
L recently had a little word explosion! It's amazing! Anytime it rains he screams, "It's Snow!!!" He also says it when he rips up little pieces of paper and throws them in the air over his head! He also handed some letters to the hubs the other night and told him to, "throw." He's also started to say, "train." They aren't really very functional words for the every day thing, but we will take it. It's more then he's ever said, so I am prouder than proud!
G started his seizure medication. I'm thinking this isn't the right one for him. Since he's started taking it, my sweet, laid back little boys has become a moody, cranky and perhaps possessed (but cute) little man. It all started the day after his first dose of medication. Needless to say, I have a call into the neurologist to see if this is normal and to see if we can try another medication. What if his seizures are what made him so calm and this is the new him?!?! We're in for it if that's the case! I've lost count of how many times I've been hit or kicked in the face since he started the medicine. This just isn't my sweet boy. He's also been extra stimmy this week. My poor baby. On a posative note, he now likes "Bob The Builder." When they sing, "Can we build it?" G yells out, "YEAH!!" in his sweet cute little G voice.
L recently had a little word explosion! It's amazing! Anytime it rains he screams, "It's Snow!!!" He also says it when he rips up little pieces of paper and throws them in the air over his head! He also handed some letters to the hubs the other night and told him to, "throw." He's also started to say, "train." They aren't really very functional words for the every day thing, but we will take it. It's more then he's ever said, so I am prouder than proud!
Tuesday, January 7, 2014
A New Year, A New Diagnosis.
Here we are, 2014. A new year a new go at life and all that other fun stuff. What does it mean for G? Another diagnosis. If y'all remember about two weeks ago, G had a 72 hour EEG done. The results were delayed because of the holiday's and the hospital being short staffed due to the season. Well, we got the call today. G has epilepsy. He's having seizures on both sides of the brain, multiple times a day. Tomorrow he starts taking Zorontine to see if we can get them under control. The hubs and I were shocked. We thought the test wasn't going to show anything. When he was one, he had a sedated EEG which didn't show anything. The Dr. said he can't say for sure he wasn't having seizures, but he wasn't having them during the test. As time went on we kind of put it on the back burner and thought it was all due to his Autism. It wasn't until two of his therapists had brought up that they thought he was having seizures, and a phone call or two, or three of four from me, that the neurologist decided to do the 72 hour EEG. The therapists were right!
What are we hoping for? We're hoping that maybe some of his delays and regression are due to seizures and with the right medication he may have some improvements. We're not expecting him to wake up the next day and start talking, but maybe over time it might help, maybe it'll help with his balance and/or maybe it will just help him be able to concentrate. Maybe it won't make a difference. Only time
In other news, G said "more" the other day and L started singing along with Bert and Ernie whenever they sing, "I LIIIIIIIKE YOOOOOOU!" Cutest thing ever! L has also been a bit of a bully lately and pushing G around. This age is no joke!
What are we hoping for? We're hoping that maybe some of his delays and regression are due to seizures and with the right medication he may have some improvements. We're not expecting him to wake up the next day and start talking, but maybe over time it might help, maybe it'll help with his balance and/or maybe it will just help him be able to concentrate. Maybe it won't make a difference. Only time
In other news, G said "more" the other day and L started singing along with Bert and Ernie whenever they sing, "I LIIIIIIIKE YOOOOOOU!" Cutest thing ever! L has also been a bit of a bully lately and pushing G around. This age is no joke!
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