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.
Sunday, May 4, 2014
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!!
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