Am I the only one who hasn't thought the summer was awesome or wonderful or easy? Am I the only one who can't believe Labor Day is already here because we've been having so much fun? These are the people I keep running into. I'm hoping you guys tell me I'm not alone.
We didn't put bathing suits on once this summer. We never went to the pool or the beach or the spray park. We spent the summer in therapy and driving 45 minutes each way to it. Every day. You know what my kids learned this summer? How to sit in the waiting room while their siblings are in therapy or in doctor appointments, with the help of snacks and iPads of course. The time there is still challenging but it has become something we just do.
To me, for our lifestyle, this is a huge accomplishment. Since my 4 kiddos are ages 6,5,4 and 3, it has been a nightmare for me to take them alone. I am able to make a therapy schedule for the fall just counting on myself which is a huge relief. The place we go to for therapy, now knowing and treating all four of my kiddos, and seeing us every day has been amazing about helping me double up on appointments. Having back to back Speech, PT or OT or having multiple kids have appointments at the same time. My 3 younger kids all have OT at the same time, they each work with their own therapist for about 40 minutes and then do something all together to help them learn to play together since they have no idea how to do that. The hope is that if they learn to play together, it will minimize the constant chaos at home.
Maybe next summer we won't spend every day in therapy or at the doctors. Maybe all this hard work will have paid off and they will want to be wet, they will want to walk on sand and they will play together. That's why we spend all the time in the waiting room...for the success that eventually comes. We will keep on keepin on.
Family with 4 kids. Autism included.
Friday, August 30, 2013
Monday, August 26, 2013
Staying Strong
Some days I feel like Autism is beating us with a stick. Not letting us get ahead, not letting us move forward, keeping our entire family in a static position of survival. This position of survival isn't really living, it's purely surviving day to day life. It often feels like we are just trying to survive Autism. While surviving, we aren't doing all the fun family and kid things other are doing. We are literally only surviving.
Autism and it's friends beat us daily. Autism brought friends to the party. This party that no one wanted to be invited to, with no opportunity to decline. Autism's friends are the list of accompanying diagnoses that keeps growing. More things to Google. More things to learn and understand. New battle tactics become necessary.
We are fighting daily battles, all day long. We go from one battle to the next, often multiple battles at a time. Some we don't even know what or why we're fighting. Some battles we all end up in tears together holding each other crying. This is what autism has done to us, to our family. It continues to beat us, some days harder than others. If it takes a day off from beating us, we pay for it. We live on the edge. The edge is a very stressful place to live. There is no break, no real relaxing and no way to plan or count on anything.
Staying strong can be tough. Especially when we are exhausted and running on empty. Staying strong is required because getting lost in all those terms and be dangerous but knowing that we need to learn and understand. Staying strong is having patience about meltdowns that we don't know a cause for or don't understand. Staying strong is the rearranging of every single part of our lives for our kiddos, constantly. Staying strong is staying up late to wash the only shorts that don't hurt. Staying strong is staying awake at night trying to figure out how to tackle an issue. Staying strong is about having tons of patience. Staying strong is being online, reading and talking to other parents trying to find new ideas. Staying strong is not becoming bitter while you sit on the sidelines watching your family and friends move forward living typical lives. Staying strong means seeking help for the kiddos and working for progress but it's also about realistic. Staying strong is about not losing your shit when you hear hours of screaming every day and have no help and no adult conversation because no one understands. Staying strong is living in constant turmoil and getting up every morning ready for another day. Staying strong is realizing that the life you have isn't the life you were expecting and dealing with that, moving forward and embracing it.
Staying strong requires physical, mental and emotional endurance. Some days staying strong is more than difficult. Sometimes we aren't strong but we regain our strength.
Autism is relentless. It swings it's stick at us, trying to rattle our half full glass. We have to keep things in perspective and stay strong. Our kiddos need us. Staying strong is the only option. We do it for them.
Autism and it's friends beat us daily. Autism brought friends to the party. This party that no one wanted to be invited to, with no opportunity to decline. Autism's friends are the list of accompanying diagnoses that keeps growing. More things to Google. More things to learn and understand. New battle tactics become necessary.
We are fighting daily battles, all day long. We go from one battle to the next, often multiple battles at a time. Some we don't even know what or why we're fighting. Some battles we all end up in tears together holding each other crying. This is what autism has done to us, to our family. It continues to beat us, some days harder than others. If it takes a day off from beating us, we pay for it. We live on the edge. The edge is a very stressful place to live. There is no break, no real relaxing and no way to plan or count on anything.
Staying strong can be tough. Especially when we are exhausted and running on empty. Staying strong is required because getting lost in all those terms and be dangerous but knowing that we need to learn and understand. Staying strong is having patience about meltdowns that we don't know a cause for or don't understand. Staying strong is the rearranging of every single part of our lives for our kiddos, constantly. Staying strong is staying up late to wash the only shorts that don't hurt. Staying strong is staying awake at night trying to figure out how to tackle an issue. Staying strong is about having tons of patience. Staying strong is being online, reading and talking to other parents trying to find new ideas. Staying strong is not becoming bitter while you sit on the sidelines watching your family and friends move forward living typical lives. Staying strong means seeking help for the kiddos and working for progress but it's also about realistic. Staying strong is about not losing your shit when you hear hours of screaming every day and have no help and no adult conversation because no one understands. Staying strong is living in constant turmoil and getting up every morning ready for another day. Staying strong is realizing that the life you have isn't the life you were expecting and dealing with that, moving forward and embracing it.
Staying strong requires physical, mental and emotional endurance. Some days staying strong is more than difficult. Sometimes we aren't strong but we regain our strength.
Autism is relentless. It swings it's stick at us, trying to rattle our half full glass. We have to keep things in perspective and stay strong. Our kiddos need us. Staying strong is the only option. We do it for them.
Wednesday, August 14, 2013
Name That Tune
This afternoon I went to our 4th IEP meeting for this fall, this one was for my daughter. Her case worker called me and said today was the meeting and I didn't show up so what did I wanna do. I said I didn't get the letter and would never have missed it. Already knowing me, she said she figured but that this was the only day the Child Study Team would be in session before school starts on September 9th so if I didn't go today she wouldn't be able to start school then. She asked if there was any way I could come this afternoon. I said I can come now but I gotta bring all four kiddos with me which she said was ok so I got everyone ready to go.
I drag them over to the school armed with iPads and snacks. I'm pretty nervous cause things have been hairy here and we've caused a major scene everywhere we have gone lately.
My 5 year old son was acting really crazy and rubbing and licking me and was clearly in overload. He was carrying his iPad by it's handle as he does everywhere he goes. He turns his iPad on which immediately starts blaring 'Blurred Lines'! Everyone on the Child Study Team burst out laughing and by those first couple beats every single person knew the song before I turned it off. I told them that he thinks it's a kid song since it says to be a good girl in it. Everyone was hysterical.
I'm such a good parent...what a prime parenting moment for the team who evaluates all my kiddos to see....Everybody get up!
I drag them over to the school armed with iPads and snacks. I'm pretty nervous cause things have been hairy here and we've caused a major scene everywhere we have gone lately.
My 5 year old son was acting really crazy and rubbing and licking me and was clearly in overload. He was carrying his iPad by it's handle as he does everywhere he goes. He turns his iPad on which immediately starts blaring 'Blurred Lines'! Everyone on the Child Study Team burst out laughing and by those first couple beats every single person knew the song before I turned it off. I told them that he thinks it's a kid song since it says to be a good girl in it. Everyone was hysterical.
I'm such a good parent...what a prime parenting moment for the team who evaluates all my kiddos to see....Everybody get up!
Saturday, July 27, 2013
Yay Me!
Holy Guacamole! I am so excited that A Legion for Liam gave me The Liebster Award!
The winners must do the following:
1. Thank the Liebster Awared presenter on your blog
2. Link back to the blogger that presented it to you
3. Copy and Paste the award on your blog
4. Present the award to 5 or 11 blogs that deserve to be noticed.
5. Let them know they've been presented with the Liebster Award
6. Answer 11 questions posted by the presenter
7. Eat some dark chocolate. It has anti-oxidants in it. Unless you are allergic to chocolate. Then skip 7.
Let's do this!
1. Thank you A Legion for Liam for presenting me with the Liebster Award. This is super exciting and I'm very honored.
2. Done.
3. Done.
4. I present to...
A Chameleon in the Spectrum
Sleep Deprivation Diaries
MicahBoyGenius
Bugaboos Treasures
Rubber Duckies and Spoons
5. Doing that next.
6. Questions about me...
1. What, if anything, is completely off limits as far as blog topics for you? Nothing specifically. I started blogging to talk about life with Autism and being a part of the Autism community but who knows where it will go.
2. What is your favorite sound? Silence!
3. If you could go back and talk to you 15 year old self, what one piece of advice/information would you share? Be wise about people, they are not always what they seem.
4. How did you end up doing what you do today? (If you're a SAHM, what made you choose between that vs. going back to work? If you work a paying job, how did you end up in the field you are in?) I decided to stay home when our first baby was born and have been home since. He was born at 32 weeks and in the NICU for 5 weeks and as soon as he came home we were expecting baby #2. The first 2 kids are 12 months apart, then 14 months until the 3rd was born and 14 months until the 4th was born. All came in less than 3 and a half years. They are now 6,5,4 and 3 and all have Autism so I'm pretty busy!
5. What is your guilty pleasure? Reading. I love to read and have a book in my hand any minute possible.
6. What's your favorite candy? I love dark chocolate...it must be dark.
7. What prompted you to start your blog? A gentle push by some friends because our life with 4 kids with Autism is so unique.
8. Do you have a favorite food? If so, what? Sushi!
9. If you had to pick one thing to change about yourself, what would it be? I would be more artsy creative so I could come up with more fun things to do with the kids...and be good at it!
10. What physical attribute do you like the most about yourself? My strength that allows me to keep up with the kids and carry them and all their stuff. I could never keep up without that!
11. Do you still live where you grew up? If not, how far away are you from your hometown? I don't live where I grew up. We currently live about 6 hours from there.
It's been fun! Now, I'm gonna eat Dark Chocolate!
Thursday, July 25, 2013
Welcome to Autism
There should be a welcome letter sent to parents new to Autism life...something like, "Welcome to a community where the parents are the strongest, most dedicated and understanding parents to the bravest children in the world."
It took me a long time to figure out this new world I'm now a part of. The welcome letter would have opened my eyes a lot sooner. Sometimes I see parents that are clearly new to the journey and I want to tell them this...don't be sorry for what you might think you lost...look at what you have gained.
I love the camaraderie of Autism parents and how we all cheer for each other's kids. I've said it before and I'll say it again...No one truly understands what it's like to live with Autism. No one. Visiting it or knowing it is not living with it.
Autism will break your heart and put it back together again a million times. You know who's got your back....the other parents. They've been there, done that, cried about it and smiled about it. And, they can tell you what they did to survive it.
They get the sarcasm and sense of humor that we must have to survive this unpredictable and crazy life that we are all living.
They understand what it's like to never sleep well.
They know how it feels to give more when you are way past empty.
They understand what it's like to advocate and fight for what is right in school.
They've cheered their kiddos through hours of therapy.
They've celebrated milestones whenever they might happen.
They understand how those looking in at our world view and treat us and our kids.
They've seen the looks and received the criticism.
They feel the heartbreak when their child struggles.
They understand how nothing is easy.
They know what it's like to lose family and friends.
They know how it is to survive without much or any real support.
They know the painful decisions we have to make.
They know what it's like to worry about the future of our kiddos.
Entering this world is extremely overwhelming in so many ways...trying to learn a whole new language, understand a child's behaviors, therapies and how to help them. If newbies were just told at least this part about the other parents, the transition would be a lot smoother and easier to manage.
To know the other parents is to know support like no other, even if they all live inside the computer. If there was a welcome letter, it would be obvious that one can lean on the parents in our community and they will hold you up while you figure the rest out.
It took me a long time to figure out this new world I'm now a part of. The welcome letter would have opened my eyes a lot sooner. Sometimes I see parents that are clearly new to the journey and I want to tell them this...don't be sorry for what you might think you lost...look at what you have gained.
I love the camaraderie of Autism parents and how we all cheer for each other's kids. I've said it before and I'll say it again...No one truly understands what it's like to live with Autism. No one. Visiting it or knowing it is not living with it.
Autism will break your heart and put it back together again a million times. You know who's got your back....the other parents. They've been there, done that, cried about it and smiled about it. And, they can tell you what they did to survive it.
They get the sarcasm and sense of humor that we must have to survive this unpredictable and crazy life that we are all living.
They understand what it's like to never sleep well.
They know how it feels to give more when you are way past empty.
They understand what it's like to advocate and fight for what is right in school.
They've cheered their kiddos through hours of therapy.
They've celebrated milestones whenever they might happen.
They understand how those looking in at our world view and treat us and our kids.
They've seen the looks and received the criticism.
They feel the heartbreak when their child struggles.
They understand how nothing is easy.
They know what it's like to lose family and friends.
They know how it is to survive without much or any real support.
They know the painful decisions we have to make.
They know what it's like to worry about the future of our kiddos.
Entering this world is extremely overwhelming in so many ways...trying to learn a whole new language, understand a child's behaviors, therapies and how to help them. If newbies were just told at least this part about the other parents, the transition would be a lot smoother and easier to manage.
To know the other parents is to know support like no other, even if they all live inside the computer. If there was a welcome letter, it would be obvious that one can lean on the parents in our community and they will hold you up while you figure the rest out.
Friday, July 19, 2013
Do you know the answer?
In a house full of Autism, we prepare and discuss upcoming events over and over and over and over and over etc! Hundreds of times. Literally.
However, questions often come up that I don't know the answers to. Answers that are impossible for me to know. Answering such questions incorrectly can lead to immediate disaster. This is not a guessing game. Assumptions can be deadly... I'm sure you've heard the line about assuming...here the ass is always ALL ME!
Sometimes we can successfully redirect and dodge a bullet but other times people on the west coast can hear our meltdown happening on the east coast.
It's really amazing how their brains work and think about things because they ask questions and worry about stuff that would never in a million years pop into my brain. Like being worried about ice cream coming in a plastic or glass bowl. I don't care what ice cream comes in as long as it gets to me!
They ask a million questions over and over and very quickly. It's like rapid fire coming from 4 directions. I must be careful to always be paying attention to what they're saying cause if I misstep then it's trouble. They'll catch me in the next rotation of questions and will know my answer isn't the same as one of the hundreds of times before and someone or multiple people will lose it. The car rides going places are consumed with a constant drilling of events that are going to take place, their order, what the people would be wearing, will there be boys or girls, what room will I go in when I get there, what color will it be, will the food be on plates or bowls, will there be a potty there, will the cups have lids and straws, etc etc etc.
Sometimes I won't remember what I said the last time a certain question was asked and then I'm screwed. I can see it in their eyes that they are waiting for me to say the same thing, almost forming the answer with their mouths in anticipation of what is coming out of mine and I don't know what to say!
I've gotten good at trying to answer but not answer questions, giving them some vague response that throws the question back to them or sort of leaves it open-ended. The best I can hope for sometimes is to throw them off for a minute or I can hope that they or another kiddo will spit out the answer I forgot.
Question diversion is just another one of those skills I've developed as an Autism Mom. If I could just get my memory to keep up we would be better off but that probably involves sleep so I'll keep hoping for sleep.
However, questions often come up that I don't know the answers to. Answers that are impossible for me to know. Answering such questions incorrectly can lead to immediate disaster. This is not a guessing game. Assumptions can be deadly... I'm sure you've heard the line about assuming...here the ass is always ALL ME!
Sometimes we can successfully redirect and dodge a bullet but other times people on the west coast can hear our meltdown happening on the east coast.
It's really amazing how their brains work and think about things because they ask questions and worry about stuff that would never in a million years pop into my brain. Like being worried about ice cream coming in a plastic or glass bowl. I don't care what ice cream comes in as long as it gets to me!
They ask a million questions over and over and very quickly. It's like rapid fire coming from 4 directions. I must be careful to always be paying attention to what they're saying cause if I misstep then it's trouble. They'll catch me in the next rotation of questions and will know my answer isn't the same as one of the hundreds of times before and someone or multiple people will lose it. The car rides going places are consumed with a constant drilling of events that are going to take place, their order, what the people would be wearing, will there be boys or girls, what room will I go in when I get there, what color will it be, will the food be on plates or bowls, will there be a potty there, will the cups have lids and straws, etc etc etc.
Sometimes I won't remember what I said the last time a certain question was asked and then I'm screwed. I can see it in their eyes that they are waiting for me to say the same thing, almost forming the answer with their mouths in anticipation of what is coming out of mine and I don't know what to say!
I've gotten good at trying to answer but not answer questions, giving them some vague response that throws the question back to them or sort of leaves it open-ended. The best I can hope for sometimes is to throw them off for a minute or I can hope that they or another kiddo will spit out the answer I forgot.
Question diversion is just another one of those skills I've developed as an Autism Mom. If I could just get my memory to keep up we would be better off but that probably involves sleep so I'll keep hoping for sleep.
Tuesday, July 9, 2013
5 Things to say to an Autism parent
In response to my blog post about the 5 things I don't want to hear as an Autism parent (which you can read here) I thought a list of things to say seemed like it might be helpful.
Here are some options to say to an Autism parent that we would prefer to hear.
1. What can I do to help or support you? We don't hear this enough, that's for sure. Help or support can come in a huge range of actions, from texting to helping out with the kids. Anything between that would be helpful or supportive. We live in a very isolated world. We are often lonely, sleep deprived, over-worked, over-stressed and would love a little help.
2. That must be really hard. Just acknowledge the obvious. It is really hard. Hearing that validates what we are doing without seeming patronizing.
3. You're doing a great job. I can't express enough how wonderful it would be for an Autism parent to hear this. Give them credit for all their hard work, difficult decisions, hard days and sleepless nights.
4. I have no idea what you're going through. This is true and it's ok to say. Others don't know what it's like to deal with the hundreds of issues that we deal with on a daily basis. Our lives are different. It is impossible to know what we are going through unless you are also an Autism parent.
5. I don't know much about Autism, what should I know? Saying this doesn't make one look ignorant but interested in learning more and being involved. Most of what people know about Autism isn't even accurate and we would love hearing that people want to learn more. Autism Awareness and Acceptance are really important to us.
Here are some options to say to an Autism parent that we would prefer to hear.
1. What can I do to help or support you? We don't hear this enough, that's for sure. Help or support can come in a huge range of actions, from texting to helping out with the kids. Anything between that would be helpful or supportive. We live in a very isolated world. We are often lonely, sleep deprived, over-worked, over-stressed and would love a little help.
2. That must be really hard. Just acknowledge the obvious. It is really hard. Hearing that validates what we are doing without seeming patronizing.
3. You're doing a great job. I can't express enough how wonderful it would be for an Autism parent to hear this. Give them credit for all their hard work, difficult decisions, hard days and sleepless nights.
4. I have no idea what you're going through. This is true and it's ok to say. Others don't know what it's like to deal with the hundreds of issues that we deal with on a daily basis. Our lives are different. It is impossible to know what we are going through unless you are also an Autism parent.
5. I don't know much about Autism, what should I know? Saying this doesn't make one look ignorant but interested in learning more and being involved. Most of what people know about Autism isn't even accurate and we would love hearing that people want to learn more. Autism Awareness and Acceptance are really important to us.
Monday, July 8, 2013
5 things I wish people wouldn't say to me
1. I'm sorry. Sorry about what? Sorry that you don't know what else to say? Sorry that we are in a conversation that you find uncomfortable? I know you're not sorry it's me and not you. Don't be sorry. There isn't anything for you to be sorry about. It is what it is. We have Autism. That's that. Don't treat us weird or ignore us or unfriend us. Support us, then you will have nothing to be sorry about.
2. Are you sure? I'm not sure how people have decided that they are an authority on Autism. I'm not sure what they see or don't see that makes them think otherwise. Someone who knows about Autism would never say that. So then, saying it just makes one look ignorant.
3. I don't know how you do it. They are my kids. I would do anything for my kids, just like any parent. Doing it is the only option. You're right though, you don't know how I do it. You have no idea what it's like to live with Autism. I live Autism every minute of every day. Parents adapt to what their children bring into their lives. It's a simple concept, I love them and will do anything for them, that's how I do it.
4. We are only given as much as we can handle. I question that a lot. A lot. How much can I handle and why is it constantly being tested? I have taken on what has been given to me because my heart is full of love for my kids. However, I am often pushed to many limits - emotional, mental and physical. My patience level is tested regularly. I know for a fact that I am a much stronger person since I have been on this journey but I don't need other people to tell me some cliché to eat up space in a conversation where they don't know what to say.
5. What's their special skill? I hate this question. It's offensive to me. My kiddos all have many unique skills. My 4 year old isn't going to college in the fall. My 2 year old isn't reading. My 5 year old isn't composing a Sonata. My 6 year old hasn't cured Cancer. They are just amazing kids that are incredibly brave. Isn't that enough? To me, it's everything.
2. Are you sure? I'm not sure how people have decided that they are an authority on Autism. I'm not sure what they see or don't see that makes them think otherwise. Someone who knows about Autism would never say that. So then, saying it just makes one look ignorant.
3. I don't know how you do it. They are my kids. I would do anything for my kids, just like any parent. Doing it is the only option. You're right though, you don't know how I do it. You have no idea what it's like to live with Autism. I live Autism every minute of every day. Parents adapt to what their children bring into their lives. It's a simple concept, I love them and will do anything for them, that's how I do it.
4. We are only given as much as we can handle. I question that a lot. A lot. How much can I handle and why is it constantly being tested? I have taken on what has been given to me because my heart is full of love for my kids. However, I am often pushed to many limits - emotional, mental and physical. My patience level is tested regularly. I know for a fact that I am a much stronger person since I have been on this journey but I don't need other people to tell me some cliché to eat up space in a conversation where they don't know what to say.
5. What's their special skill? I hate this question. It's offensive to me. My kiddos all have many unique skills. My 4 year old isn't going to college in the fall. My 2 year old isn't reading. My 5 year old isn't composing a Sonata. My 6 year old hasn't cured Cancer. They are just amazing kids that are incredibly brave. Isn't that enough? To me, it's everything.
Wednesday, June 19, 2013
My Anthem
It's funny how a song can hold a memory, transporting you back to a moment in your life the instant you here the instruments and the lyrics start. Just like when I hear Alabama's 'Mountain Music', I am immediately transported back to being a little girl bundled up in my Dad's pickup truck driving around Upstate NY plowing snowy driveways in the long cold winter.
3 years ago, we entered the world of Autism. On June 22, 2010 our son, Bradley, was diagnosed with Autism at 28 months old. That was the first time we heard the words that our child has Autism, little did we know how many more times we were going to hear them. After we left the final evaluation, we got in the car and talked for a while, then the radio was turned on and Tom Petty's 'I Won't Back Down' rocked through the speakers. Every time I hear this song, I am transported back to that car ride where the emotions were raw...the fear, the grief, the confusion, how I felt physically ill...all is we knew was that our son had Autism and he needed help.
We've stood at the gates of hell many days since then. We've worked hard, we've had broken hearts and cried many tears. We've picked up the pieces, started again and had so much success. We will stand at those gates everyday and hold our children's hands and do anything to help them. They will never stand alone. We will always stand together.
3 years ago, we entered the world of Autism. On June 22, 2010 our son, Bradley, was diagnosed with Autism at 28 months old. That was the first time we heard the words that our child has Autism, little did we know how many more times we were going to hear them. After we left the final evaluation, we got in the car and talked for a while, then the radio was turned on and Tom Petty's 'I Won't Back Down' rocked through the speakers. Every time I hear this song, I am transported back to that car ride where the emotions were raw...the fear, the grief, the confusion, how I felt physically ill...all is we knew was that our son had Autism and he needed help.
Well I won't back down, no I won't back down
You could stand me up at the gates of hell
But I won't back down
You could stand me up at the gates of hell
But I won't back down
We've stood at the gates of hell many days since then. We've worked hard, we've had broken hearts and cried many tears. We've picked up the pieces, started again and had so much success. We will stand at those gates everyday and hold our children's hands and do anything to help them. They will never stand alone. We will always stand together.
Gonna stand my ground, won't be turned around
And I'll keep this world from draggin' me down
Gonna stand my ground and I won't back down
And I'll keep this world from draggin' me down
Gonna stand my ground and I won't back down
I will continue to spread Autism Awareness so the world is a more accepting place for them. And, helping others because the fear I felt in that car ride was real, it was powerful and it permeated me. Our lives may be different and hard but nobody is gonna drag us down.
Hey baby, there ain't no easy way out
Hey I will stand my ground
And I won't back down
Hey I will stand my ground
And I won't back down
The biggest truth is that there is no easy way. Autism is a challenge. Every. Single. Day. Since that day, this song has become my anthem. This song was a sign that came when I needed it the most with lyrics that could inspire me for years. When we are having a bad day or I need a pick me up, I listen to this. I'm regenerated because I can remember how I felt that day and how far we've come. Because, we won't back down.
Tuesday, June 11, 2013
A Brave Attempt
Some days I get brave or stupid or delusional. A long time has gone by since I've braved a store with the kids alone. Months. They are currently 6,5,4 and 3 in July. The 6,5, and almost 3 all diagnosed with ASD, the 4 year old going through evaluations now.
I hate having to do all the shopping when my husband is home because then I don't see him. So, I decided to take them all to WalMart with a short list of stuff we needed. One of which was laundry soap and since I had 3 pee soaked beds this morning, buying that was a necessity.
I parked strategically and used the handicap pass that I have for Bradley, my 5 year old. This has made going out much less of a safety risk. I parked near the cart drop-off where I spotted the BIG cart, the one with 2 seats and the baby area in the front of the cart so I have the youngest 3 strapped in and the oldest on foot.
We started out good. Picked out some fruit and ice cream and started opening snacks. To note- we left with an empty box of cereal, an empty bag of goldfish and an open box of Strawberry Teddy Grahams (new flavor, big deal). I know that if I keep people eating than I can usually keep people happy, but I must move quickly. Bradley is quickly doing his current verbal stim, I know he is trying to deal with being there. We must also stop, pick up and fix misplaced items along the way because disorganization is unacceptable. If my kids ran that store, it would look much different.
We were almost done, doing the usual, counting the aisles as we see the signs with their numbers. Until the unthinkable happened... the number 8 was missing. What the hell, how you could you do that to me!?!? I'm working hard re-directing, offering other food options knowing my time is about out. We proceed to the front of the store and go by the seasonal stuff where all hell brakes loose. Bradley spots the American Flags and starts screaming about wanting one. No, we don't need a flag. They are the huge ones to hang on your house. I say no and keep going and he totally loses it in a level 10 meltdown. I've been through this before and I'll do it again, so I just keep moving towards the front of the store as it gets worse and worse, he is hitting me so much I can barely drive this massive cart and is kicking and hitting the younger kids because they are strapped in unfortunately close to him.
There are only a few lanes open, everyone is staring at us, he is going nuts, banging his head, thrashing in the cart and jumping as far as the seatbelt will allow which is shaking the whole cart and screaming American Flag over and over. I'm sure the people in the back in the electronics section heard it. People got in line behind us and moved away. Everyone was staring at him, all the way across the front end of the store and all the people in Customer Service, glaring at me with those eyes...'control your kid, he's a bad kid, you're a bad mom' Autism parents, you know what I mean. When I could actually hear something other than the screaming, I heard mumblings of others saying to each other, loud enough so they knew I could hear, that they couldn't hear each other talk.
We finished checking out, I didn't say anything to those people. I have before but the other kids were too upset and I was so worried about Bradley hurting himself and the other kids. The girls were crying because he kept hurting them. I have scratch marks from his nails all over my arms and neck. He was kicking and hitting me and he bit me.
He still hasn't stopped screaming American Flag when we leave. I get him in the car, carefully because I know he'll run off into the busy parking lot if given an opportunity. He is still upset about that flag when we get home, the meltdown continued for another hour. I must admit, I appreciate his patriotism and loyalty to the American Flag but would prefer him to channel it another way.
I got them in the car, drove home and made dinner. I just keep going but I'm sad. I was so hopeful that I could take them out and have fun and it isn't possible. He can not handle it. I'm sure there are people that will read this and think that he is a brat and was just crying because of the flag. That's fine, then they don't get it, just like all those people staring at us at the store.
This isn't new, just another trip out but the worst public meltdown in a while. I'm disappointed. I was hoping it would be better. Different. Better. Successful. I'd waited months to try again. It will be months before I make another attempt. I lost a battle today but not the war. I'll keep fighting the war because I know someday we'll have a successful trip.
It's about the war, not the battles in the life of Autism. As parents, we may lose daily battles but our commitment and love for our kids keeps us fighting. I won't quit, I'll get brave and try again but not for a while. I know he can't handle it, yet. Yet.
I hate having to do all the shopping when my husband is home because then I don't see him. So, I decided to take them all to WalMart with a short list of stuff we needed. One of which was laundry soap and since I had 3 pee soaked beds this morning, buying that was a necessity.
I parked strategically and used the handicap pass that I have for Bradley, my 5 year old. This has made going out much less of a safety risk. I parked near the cart drop-off where I spotted the BIG cart, the one with 2 seats and the baby area in the front of the cart so I have the youngest 3 strapped in and the oldest on foot.
We started out good. Picked out some fruit and ice cream and started opening snacks. To note- we left with an empty box of cereal, an empty bag of goldfish and an open box of Strawberry Teddy Grahams (new flavor, big deal). I know that if I keep people eating than I can usually keep people happy, but I must move quickly. Bradley is quickly doing his current verbal stim, I know he is trying to deal with being there. We must also stop, pick up and fix misplaced items along the way because disorganization is unacceptable. If my kids ran that store, it would look much different.
We were almost done, doing the usual, counting the aisles as we see the signs with their numbers. Until the unthinkable happened... the number 8 was missing. What the hell, how you could you do that to me!?!? I'm working hard re-directing, offering other food options knowing my time is about out. We proceed to the front of the store and go by the seasonal stuff where all hell brakes loose. Bradley spots the American Flags and starts screaming about wanting one. No, we don't need a flag. They are the huge ones to hang on your house. I say no and keep going and he totally loses it in a level 10 meltdown. I've been through this before and I'll do it again, so I just keep moving towards the front of the store as it gets worse and worse, he is hitting me so much I can barely drive this massive cart and is kicking and hitting the younger kids because they are strapped in unfortunately close to him.
There are only a few lanes open, everyone is staring at us, he is going nuts, banging his head, thrashing in the cart and jumping as far as the seatbelt will allow which is shaking the whole cart and screaming American Flag over and over. I'm sure the people in the back in the electronics section heard it. People got in line behind us and moved away. Everyone was staring at him, all the way across the front end of the store and all the people in Customer Service, glaring at me with those eyes...'control your kid, he's a bad kid, you're a bad mom' Autism parents, you know what I mean. When I could actually hear something other than the screaming, I heard mumblings of others saying to each other, loud enough so they knew I could hear, that they couldn't hear each other talk.
We finished checking out, I didn't say anything to those people. I have before but the other kids were too upset and I was so worried about Bradley hurting himself and the other kids. The girls were crying because he kept hurting them. I have scratch marks from his nails all over my arms and neck. He was kicking and hitting me and he bit me.
He still hasn't stopped screaming American Flag when we leave. I get him in the car, carefully because I know he'll run off into the busy parking lot if given an opportunity. He is still upset about that flag when we get home, the meltdown continued for another hour. I must admit, I appreciate his patriotism and loyalty to the American Flag but would prefer him to channel it another way.
I got them in the car, drove home and made dinner. I just keep going but I'm sad. I was so hopeful that I could take them out and have fun and it isn't possible. He can not handle it. I'm sure there are people that will read this and think that he is a brat and was just crying because of the flag. That's fine, then they don't get it, just like all those people staring at us at the store.
This isn't new, just another trip out but the worst public meltdown in a while. I'm disappointed. I was hoping it would be better. Different. Better. Successful. I'd waited months to try again. It will be months before I make another attempt. I lost a battle today but not the war. I'll keep fighting the war because I know someday we'll have a successful trip.
It's about the war, not the battles in the life of Autism. As parents, we may lose daily battles but our commitment and love for our kids keeps us fighting. I won't quit, I'll get brave and try again but not for a while. I know he can't handle it, yet. Yet.
Thursday, June 6, 2013
Important things I've learned as an Autism Mom
-People are ignorant. Most people really don't know much or anything about Autism. Most of what they think they know is inaccurate.
-I have learned who my true family and friends are. There is a lot of fake support and people who have fallen out of my life. I don't need them anyway and don't want fakeness around my family.
-Sense of humor is imperative. If I stop laughing then I'll drown.
-Knowledge is key. One must know Autism to be able to help and advocate for their child.
-I can live without much sleep. I barely sleep and am still alive and moving forward.
-No one understands what it's like to be an Autism parent except another Autism parent. More importantly, they are the only other people who know what it's like to live with Autism. Living with Autism is different than knowing it.
-Small successes are priceless. The smallest things have made me jump up and down and cry tears of joy. Our kiddos accomplish things at their own pace, we work long and hard, and then we celebrate!
-Clean house is optional. The house will still stand if it is dirty. We will all survive even if there is clutter or the house isn't cleaned constantly. There are more important things to do.
-True heartbreak sucks. Watching my children struggle is the most painful thing ever.
-I've learned to pick my battles with the kids and how things must be for them. Safety and health first then who knows.
-Stress relief and an occasional Ugly Cry are necessary. Finding an outlet of emotions, frustration, loneliness, anger, grief etc are necessary. I'll burn out if I don't have something.
-It's important to not pass judgement on others. This happens to us on a regular basis.
-It's ok to hate Autism. I try to be positive all the time. However, Autism has made life tough for my kids, given them challenges they shouldn't have and made it hard to enjoy things that should be easy for kids to. A lot of days I hate Autism. It doesn't mean I hate my kids or love them an less, just that things were easier for them and that they were able to do things they can't.
-Facebook has provided a way to talk to other Autism parents that has been more helpful than I could have ever imagined. I have been able to get real advice from people living it too and just knowing that there are others out there dealing with the same things has made a huge difference for me.
-I've learned to tune out a lot of noise. There is always so much crying, screaming, verbal stims and electronic devices making noise at the same time. The noise alone could drive someone nuts. I swear they hear our house in space.
-NO ONE knows my child better than I do, not any Doctor or specialist or know-it-all family member.
-Patience is at times the most challenging thing to have on the planet and that's ok. Some days I gotta dig deep within myself for patience.
-Loneliness is a fact of life. Being a Special Needs Mom is a lonely path. The only people that truly understand my life now are other Special Needs Moms.
-I am stronger and can handle more than I thought.
-I have learned who my true family and friends are. There is a lot of fake support and people who have fallen out of my life. I don't need them anyway and don't want fakeness around my family.
-Sense of humor is imperative. If I stop laughing then I'll drown.
-Knowledge is key. One must know Autism to be able to help and advocate for their child.
-I can live without much sleep. I barely sleep and am still alive and moving forward.
-No one understands what it's like to be an Autism parent except another Autism parent. More importantly, they are the only other people who know what it's like to live with Autism. Living with Autism is different than knowing it.
-Small successes are priceless. The smallest things have made me jump up and down and cry tears of joy. Our kiddos accomplish things at their own pace, we work long and hard, and then we celebrate!
-Clean house is optional. The house will still stand if it is dirty. We will all survive even if there is clutter or the house isn't cleaned constantly. There are more important things to do.
-True heartbreak sucks. Watching my children struggle is the most painful thing ever.
-I've learned to pick my battles with the kids and how things must be for them. Safety and health first then who knows.
-Stress relief and an occasional Ugly Cry are necessary. Finding an outlet of emotions, frustration, loneliness, anger, grief etc are necessary. I'll burn out if I don't have something.
-It's important to not pass judgement on others. This happens to us on a regular basis.
-It's ok to hate Autism. I try to be positive all the time. However, Autism has made life tough for my kids, given them challenges they shouldn't have and made it hard to enjoy things that should be easy for kids to. A lot of days I hate Autism. It doesn't mean I hate my kids or love them an less, just that things were easier for them and that they were able to do things they can't.
-Facebook has provided a way to talk to other Autism parents that has been more helpful than I could have ever imagined. I have been able to get real advice from people living it too and just knowing that there are others out there dealing with the same things has made a huge difference for me.
-I've learned to tune out a lot of noise. There is always so much crying, screaming, verbal stims and electronic devices making noise at the same time. The noise alone could drive someone nuts. I swear they hear our house in space.
-NO ONE knows my child better than I do, not any Doctor or specialist or know-it-all family member.
-Patience is at times the most challenging thing to have on the planet and that's ok. Some days I gotta dig deep within myself for patience.
-Loneliness is a fact of life. Being a Special Needs Mom is a lonely path. The only people that truly understand my life now are other Special Needs Moms.
-I am stronger and can handle more than I thought.
Sunday, June 2, 2013
The Cure Debate
I was listening to the news and they were discussing how a cure needs to be found for Autism. I posted a question on my Facebook page and several opinions were posted one way or the other and I got to thinkin.
I feel that the opinion of the parent is often correlated with the level of functioning their loved one has or doesn't have. Parents with non-verbal low functioning children are desperate to hear their kids voice and seem to often have a very different opinion than a parent whose child is verbal high-functioning and maybe even in a mainstream classroom. Picturing how any of these parents feel and their opinions on a cure seem easy for me to understand, I can totally see both sides.
I have 3 kids diagnosed with Autism and our 4th being evaluated in June. They are all different and have their own sensory issues, challenges and strengths. So, obviously I have many feelings about Autism that are both positive and negative.
In discussing curing, people quickly say that if a parent loves their kiddo unconditionally than why would they want to change them.
Let's be honest...we all love our kids unconditionally and we are all walking on a road that we didn't expect.
Yes, Autism has made me a better person. It has made me see the world and life in a totally different way. This is NOT about ME. At all. Being a mother and a parent has also done these things for me. How I feel about Autism and the cure debate is NOT about ME.
I don't want to change my children for who they are. But, if the Autism was taken away then they would be able to do more kid stuff without the issues they have.
Ask me, their Mommy, if I would take hurdles away so they could be a happier kids and I would say YES...but I don't want to change THEM.
My one son is lower functioning than the others. There is a smart and funny kid in there that we don't see as much as we should because everything is so clouded over by Autism. It's frustrating for him and us. I even feel differently about his Autism than I do the Autism that my other kids have.
Would I take away sensory, anxiety and social issues or anything else to help them?
All day long the answer is YES.
Go ahead, hate me, unlike my page and think I'm a horrible person. You won't be the first or the last.
I try to always be positive about Autism. It can be amazing. But, I can't sugarcoat it.
My family is Autism. We are not sports games and dance lessons.
We are Speech Therapy and OT. We are doctor appointments and IEP meetings.
I love my kids. Our family isn't the typical family next door and that's fine with me. But, as a parents I want what is best for my kids and want them to be happy. Autism prevents them from being happy a lot.
Do I think there will be a cure? No, I don't. And truthfully, if something was to come out, I wouldn't do it because I would be too scared to hurt, change or somehow lose them. I do think someday there may be a way to prevent others from having Autism.
Our kids are our kids. We will keep doing all the therapy we can to help them. We will keep advocating for them. We will keep working to spread Autism Awareness.
Most importantly, we will continue to love our Autism Family Circus.
I feel that the opinion of the parent is often correlated with the level of functioning their loved one has or doesn't have. Parents with non-verbal low functioning children are desperate to hear their kids voice and seem to often have a very different opinion than a parent whose child is verbal high-functioning and maybe even in a mainstream classroom. Picturing how any of these parents feel and their opinions on a cure seem easy for me to understand, I can totally see both sides.
I have 3 kids diagnosed with Autism and our 4th being evaluated in June. They are all different and have their own sensory issues, challenges and strengths. So, obviously I have many feelings about Autism that are both positive and negative.
In discussing curing, people quickly say that if a parent loves their kiddo unconditionally than why would they want to change them.
Let's be honest...we all love our kids unconditionally and we are all walking on a road that we didn't expect.
Yes, Autism has made me a better person. It has made me see the world and life in a totally different way. This is NOT about ME. At all. Being a mother and a parent has also done these things for me. How I feel about Autism and the cure debate is NOT about ME.
I don't want to change my children for who they are. But, if the Autism was taken away then they would be able to do more kid stuff without the issues they have.
Ask me, their Mommy, if I would take hurdles away so they could be a happier kids and I would say YES...but I don't want to change THEM.
My one son is lower functioning than the others. There is a smart and funny kid in there that we don't see as much as we should because everything is so clouded over by Autism. It's frustrating for him and us. I even feel differently about his Autism than I do the Autism that my other kids have.
Would I take away sensory, anxiety and social issues or anything else to help them?
All day long the answer is YES.
Go ahead, hate me, unlike my page and think I'm a horrible person. You won't be the first or the last.
I try to always be positive about Autism. It can be amazing. But, I can't sugarcoat it.
My family is Autism. We are not sports games and dance lessons.
We are Speech Therapy and OT. We are doctor appointments and IEP meetings.
I love my kids. Our family isn't the typical family next door and that's fine with me. But, as a parents I want what is best for my kids and want them to be happy. Autism prevents them from being happy a lot.
Do I think there will be a cure? No, I don't. And truthfully, if something was to come out, I wouldn't do it because I would be too scared to hurt, change or somehow lose them. I do think someday there may be a way to prevent others from having Autism.
Our kids are our kids. We will keep doing all the therapy we can to help them. We will keep advocating for them. We will keep working to spread Autism Awareness.
Most importantly, we will continue to love our Autism Family Circus.
Saturday, May 11, 2013
Special Needs Moms Labor of Love
The Labor of Love of a Special Needs Mom is no joke.
They work every day, all day, all night and don't sleep much. Their job description is endless, their work is never done.
Special Needs Moms do everything for their kids. They feel every challenge as if it their own hurdle. They work hard and celebrate every success as if it was their own, because it is, they work for it too. They don't give up, even if everyone else has.
They cry tears of joy and tears of sorrow, sometimes at the same time. Tears of joy can come easily, with an unexpected breakthough, a long-awaited accomplishment or just a tiny move in the right direction.
Tears of sorrow can come even easier. Watching your child struggle is something Special Needs Moms deal with and know well. It's gut wrenching.
They wear many hats. They are advocates, therapy givers, boo boo kissers, ticklers, game players, teachers, sisters, daughters, wives, some play the role of 2 parents, cleaners, laundry doers, lunch makers, bathers, taxi drivers, interpreters, translaters, cooks and a million more.
They give hugs that can fix anything. The safest place on the planet is in their arms.
Special Needs Moms didn't plan on living this life but have moved forward full speed ahead. They learned to speak a new language in a new world so they can help their kiddo.
Special Needs Moms are never off duty.
Their love is unconditional.
They are truly the unsung heroes.
They work every day, all day, all night and don't sleep much. Their job description is endless, their work is never done.
Special Needs Moms do everything for their kids. They feel every challenge as if it their own hurdle. They work hard and celebrate every success as if it was their own, because it is, they work for it too. They don't give up, even if everyone else has.
They cry tears of joy and tears of sorrow, sometimes at the same time. Tears of joy can come easily, with an unexpected breakthough, a long-awaited accomplishment or just a tiny move in the right direction.
Tears of sorrow can come even easier. Watching your child struggle is something Special Needs Moms deal with and know well. It's gut wrenching.
They wear many hats. They are advocates, therapy givers, boo boo kissers, ticklers, game players, teachers, sisters, daughters, wives, some play the role of 2 parents, cleaners, laundry doers, lunch makers, bathers, taxi drivers, interpreters, translaters, cooks and a million more.
They give hugs that can fix anything. The safest place on the planet is in their arms.
Special Needs Moms didn't plan on living this life but have moved forward full speed ahead. They learned to speak a new language in a new world so they can help their kiddo.
Special Needs Moms are never off duty.
Their love is unconditional.
They are truly the unsung heroes.
Tuesday, May 7, 2013
The Ugly Cry
Day after day, hour after hour, minute after minute, we are living Autism.
Autism has moved in and become a permanent fixture in our daily lives. We eat,
breathe and (hopefully) sleep it. For those of us who are are living it day in
and day out, life can get really stressful. We work 24 hours a day 7 days a week
with huge stress loads, little to no sleep, and don't take good care of
ourselves. We all do it and deal with it in our own ways.
Every minute, we have to keep our shit together. We have to be the strong one, keeping our family moving forward. We work hard making plans, going to appointments, following sensory diets, getting kids to eat and sleep and bathe, cooking meals, doing laundry, cleaning the house.
We play nice with some therapists, teachers, child study teams, other parents, relatives and friends. And, not so nice with others. Throw some ignorant people in the mix and the stress level can skyrocket.
Most importantly we are strong for our kids. Those on and off the spectrum. We have to create a stable and balanced environment for all of our kids. Spectrum kids can make that tough to provide for NT kids. We don't have the luxury of doing what 'normal' families do and all do stuff together. We often have to divide and conquer. We oftern have to seperate to have breaks. We live a lifestyle of constant trial and error. With little to no rest or relaxation.
We all cope in different ways and deal with stress differently, if at all. There is a time when being the constant driving force hits the wall. A private breakdown or what I call...The Ugly Cry...the total release of emotional buildup, frustrations, anger, saddness, lonliness etc. It's a brief event and then it's back to business. Because that family needs their leader back and she can never be off duty.
(Originally published on 1/15/13 on my former blog SuperMom Wears Autism Goggles/Team Bradley)
Every minute, we have to keep our shit together. We have to be the strong one, keeping our family moving forward. We work hard making plans, going to appointments, following sensory diets, getting kids to eat and sleep and bathe, cooking meals, doing laundry, cleaning the house.
We play nice with some therapists, teachers, child study teams, other parents, relatives and friends. And, not so nice with others. Throw some ignorant people in the mix and the stress level can skyrocket.
Most importantly we are strong for our kids. Those on and off the spectrum. We have to create a stable and balanced environment for all of our kids. Spectrum kids can make that tough to provide for NT kids. We don't have the luxury of doing what 'normal' families do and all do stuff together. We often have to divide and conquer. We oftern have to seperate to have breaks. We live a lifestyle of constant trial and error. With little to no rest or relaxation.
We all cope in different ways and deal with stress differently, if at all. There is a time when being the constant driving force hits the wall. A private breakdown or what I call...The Ugly Cry...the total release of emotional buildup, frustrations, anger, saddness, lonliness etc. It's a brief event and then it's back to business. Because that family needs their leader back and she can never be off duty.
(Originally published on 1/15/13 on my former blog SuperMom Wears Autism Goggles/Team Bradley)
Saturday, May 4, 2013
Dear Autism,
I never suspected that you and I would have a relationship. I never thought
I would know you so well. No matter how well I know you, you always surprise
me. Sometimes it's a bad surprise, a good punch in the gut. And other times,
the surprise is nothing short of a miracle.
Every time I think I have you figured out, when I think I have a good strategy in place, just when I think I know what to expect, you change your game without any notice. I can never be comfortable in your presence.
You don't play fair. You are known for throwing curve balls. There are no rules playing with you. I can never be totally comfortable because I know you are there. I never really know what's up or what to expect. I try to be as ready as I can. I always have to have my game face on.
I appreciate the good qualities that you have brought. I do not appreciate the bad ones and I get angry at you for making things so difficult for my family. There are many times when things that should be easy and simple are horrible and difficult because of you. You have made the smallest things at times impossible. On the other hand, you have made me appreciate the small things and celebrate the tiny successes because I now know that they can be the most joyous.
As you know, over the past two years our relationship changes by the minute. Sometimes I'm mad at you, sometimes I absolutely despise you, sometimes I accept your uninvited presence, and sometimes I actually even like you.
I understand that my feelings on this will continue to change and cycle just as everything here does. I have been on a rollercoaster of emotions with you. You have brought me to tears in an instant, broken my heart, made me the happiest and the saddest person on the planet, all at the same time.
There will always be good days and bad days. I will never be able to trust you since you are so unpredictable. Our relationship will probably always change day to day. However, I am sure we will never be besties.
From,
Mommy
(originally published 12/10/12 on my former blog, SuperMom wears Autism Goggles/Team Bradley)
Every time I think I have you figured out, when I think I have a good strategy in place, just when I think I know what to expect, you change your game without any notice. I can never be comfortable in your presence.
You don't play fair. You are known for throwing curve balls. There are no rules playing with you. I can never be totally comfortable because I know you are there. I never really know what's up or what to expect. I try to be as ready as I can. I always have to have my game face on.
I appreciate the good qualities that you have brought. I do not appreciate the bad ones and I get angry at you for making things so difficult for my family. There are many times when things that should be easy and simple are horrible and difficult because of you. You have made the smallest things at times impossible. On the other hand, you have made me appreciate the small things and celebrate the tiny successes because I now know that they can be the most joyous.
As you know, over the past two years our relationship changes by the minute. Sometimes I'm mad at you, sometimes I absolutely despise you, sometimes I accept your uninvited presence, and sometimes I actually even like you.
I understand that my feelings on this will continue to change and cycle just as everything here does. I have been on a rollercoaster of emotions with you. You have brought me to tears in an instant, broken my heart, made me the happiest and the saddest person on the planet, all at the same time.
There will always be good days and bad days. I will never be able to trust you since you are so unpredictable. Our relationship will probably always change day to day. However, I am sure we will never be besties.
From,
Mommy
(originally published 12/10/12 on my former blog, SuperMom wears Autism Goggles/Team Bradley)
Friday, April 19, 2013
D-Day
Diagnosis Day.
An exhausting day. Emotionally and physically. I don't ever sleep the night before.
Today, for the 3rd time, I was told that my child has Autism. As I listen to the evaluation report, my body goes numb. I know it's coming, I see the Autism in my kiddo. Hearing the diagnosis is still upsetting. The third time is by no means easier.
It doesn't get easier. The blow hasn't been lessened. I feel like I've been repeatedly punched in the gut over and over. My heart aches for my children.
June 22, 2010
November 16, 2012
April 19, 2013
These dates are our 3 D-Days.
I'm filled with emotions....anger, acceptance, sadness. No denial though. I know it's right.
There have been tears and there will be more. The emotional rollercoaster that I'm already on is traveling full speed and it's a bumpy ride. Up and down. High and low. As long as it doesn't crash, we are good.
Autism is part of them and I love them. However, Autism brings them many challenges that I wish they didn't have to deal with. I embrace and dislike their Autism. I would take their challenges away and bear them myself if I could. I'm sad for my kiddos, that things will be hard for them. It's hard being a kid anyway even without all the issues they have. Kids are mean and I hate to think of my kiddos being at the receiving end. I'm sad because things that should be easy and fun for kids are not for mine. Kids shouldn't worry and have anxiety, they should be carefree.
Today, it was my daughter, my baby girl. We now have both boy and girl Autism in our home.
I know the diagnosis will help her get the services she needs. I know the diagnosis doesn't change HER. She is my sweet girl, no different than she was this morning. I know that things will be more than ok. I've done this before. I know. But, my heart is still broken today.
Tomorrow is a new day and a new beginning.
An exhausting day. Emotionally and physically. I don't ever sleep the night before.
Today, for the 3rd time, I was told that my child has Autism. As I listen to the evaluation report, my body goes numb. I know it's coming, I see the Autism in my kiddo. Hearing the diagnosis is still upsetting. The third time is by no means easier.
It doesn't get easier. The blow hasn't been lessened. I feel like I've been repeatedly punched in the gut over and over. My heart aches for my children.
June 22, 2010
November 16, 2012
April 19, 2013
These dates are our 3 D-Days.
I'm filled with emotions....anger, acceptance, sadness. No denial though. I know it's right.
There have been tears and there will be more. The emotional rollercoaster that I'm already on is traveling full speed and it's a bumpy ride. Up and down. High and low. As long as it doesn't crash, we are good.
Autism is part of them and I love them. However, Autism brings them many challenges that I wish they didn't have to deal with. I embrace and dislike their Autism. I would take their challenges away and bear them myself if I could. I'm sad for my kiddos, that things will be hard for them. It's hard being a kid anyway even without all the issues they have. Kids are mean and I hate to think of my kiddos being at the receiving end. I'm sad because things that should be easy and fun for kids are not for mine. Kids shouldn't worry and have anxiety, they should be carefree.
Today, it was my daughter, my baby girl. We now have both boy and girl Autism in our home.
I know the diagnosis will help her get the services she needs. I know the diagnosis doesn't change HER. She is my sweet girl, no different than she was this morning. I know that things will be more than ok. I've done this before. I know. But, my heart is still broken today.
Tomorrow is a new day and a new beginning.
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