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
Friday, October 10, 2014
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!
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