Hi all....
Long time since I last posted, I know. Writing right now is hard....lots of things are very hard. And sadly, I feel like people don't understand. More than ever, they just don't understand.
So, Autism doesn't ever stop. I am constantly "on". There is no break because every minute, I am working to change behavior. I do this all day in my job, too. Behaviors are interesting because they change...just like weather. It's something that is day to day and minute to minute. Dealing with behavior all day and all night is tiring. It is draining.
Now....add grief. We are about to enter into the holidays. The holidays without mom? This is a first. It has me in knots. I am drowning at times. I will drive to work, a song brings a memory and boom, I am lost. I cry instantly.
Guess what? I had to tell my dad that mom was going to die. I had to make the decision to pull the plug on my mom. Did you know that????? Of course not. I hide it behind a fake smile. I tell people I am fine. But think about this.....I MADE A DECISION that led to my mom's passing. Granted, her entire body system had shut down. So it was the right decision but I made it. I made it. That haunts me....and I don't know that anyone gets it. How does one suppress those feelings on a daily basis? Let's be real...it is so hard. It is beyond difficult but that is what I am expected to do....I put a game face on every day. I do that for everyone else and yet, does everyone else know what I am suppressing???? No they don't! Some people want to know but others....they don't see it.
My life is hard. I hate saying that because I don't want anyone to feel sorry for me. I don't! Yet, I want someone to understand me....please, understand me. Autism....grief.....please understand me. Every single day is a struggle....and anymore I question myself. I want to be the best that I can be....but sometimes my spirit is broken. I feel like that is not allowed of people....and I think it's important for people to know that it is okay.
People, no matter their age, need to know they are loved. I love you....you are doing your best. Hang in there.
TTFN
Martha
Friday, November 16, 2018
Saturday, October 6, 2018
A New Home
Hello there...
Long time, no write. The loss of my mom.....it's really made many things difficult. I am not able to write...I am not interested in reading.....and now the holidays are here, birthdays are here....and they are all without her for the first time.
Life still goes on. And autism does not stop.....so honestly, grieving the loss of my mom has had to wait....doesn't that sound crazy? But it is the truth!
Right now, JB's favorite escape is telling me he wants a new family. JB doesn't take "NO" for an answer. Instead he will continue to ask...almost nag.....until he gets his way. There are many times I so want to give in because I am so over it. But I know I have to stay the course. It is what is best for JB.
His new thing is to tell me he wants a new family. He will open the garage door and run. This past week, I have chased him around the court 5 different times. And that's just this past week! Luckily, JB has low muscle tone and running pace for him is really the same pace as an adult walk. But I just trail him.....until he decides that maybe home is an ok place to be (he can get spaghettio's at home).
Home is hard. I love my son....I would never in the world change what he is and who he is. But that autism...the snap.....it's complicated and complicated is difficult. You need time to decompress and I don't get that ever. My hubby and I work opposite schedules to make things work. I can't always get a sitter....when mom was here, it was easier but now I have to rely on someone else's schedule who is now not as available as before. And even before that, I never asked anyone for help because I just never wanted anyone to deal with JB's behaviors. Now I am realizing.....I am going batty. Like really batty. Sometimes, my mind says....I want a new home too!
Alright, so what do you do? I don't know. I wish I had answers. But......many people/friends have said, "find time for you"....it's hard, so very hard. I always worry. And I would rather not. But I gotta figure it all out....JB may continue in his ways for years but I can change mine now. Just do it......take those first steps mom....just do it. I can hear my mom in my ear telling me that I am important too....Here is my promise to whoever is listening, whoever cares.....I am going to work on me so I can be better for everyone else.
TTFN
Martha
Long time, no write. The loss of my mom.....it's really made many things difficult. I am not able to write...I am not interested in reading.....and now the holidays are here, birthdays are here....and they are all without her for the first time.
Life still goes on. And autism does not stop.....so honestly, grieving the loss of my mom has had to wait....doesn't that sound crazy? But it is the truth!
Right now, JB's favorite escape is telling me he wants a new family. JB doesn't take "NO" for an answer. Instead he will continue to ask...almost nag.....until he gets his way. There are many times I so want to give in because I am so over it. But I know I have to stay the course. It is what is best for JB.
His new thing is to tell me he wants a new family. He will open the garage door and run. This past week, I have chased him around the court 5 different times. And that's just this past week! Luckily, JB has low muscle tone and running pace for him is really the same pace as an adult walk. But I just trail him.....until he decides that maybe home is an ok place to be (he can get spaghettio's at home).
Home is hard. I love my son....I would never in the world change what he is and who he is. But that autism...the snap.....it's complicated and complicated is difficult. You need time to decompress and I don't get that ever. My hubby and I work opposite schedules to make things work. I can't always get a sitter....when mom was here, it was easier but now I have to rely on someone else's schedule who is now not as available as before. And even before that, I never asked anyone for help because I just never wanted anyone to deal with JB's behaviors. Now I am realizing.....I am going batty. Like really batty. Sometimes, my mind says....I want a new home too!
Alright, so what do you do? I don't know. I wish I had answers. But......many people/friends have said, "find time for you"....it's hard, so very hard. I always worry. And I would rather not. But I gotta figure it all out....JB may continue in his ways for years but I can change mine now. Just do it......take those first steps mom....just do it. I can hear my mom in my ear telling me that I am important too....Here is my promise to whoever is listening, whoever cares.....I am going to work on me so I can be better for everyone else.
TTFN
Martha
Sunday, August 26, 2018
Songs
Hi all....
Can you think of a song that represents your life? Maybe there have been several songs....I admit that I can say that about myself. I love music, especially anything from the 80s. I am way into Culture Club right now but that's because of my mom. She loved that band. On the day of her funeral....Culture Club was on the radio. It was like a sign or something. She would reach over and turn the volume up on the radio and oh how we would sing. Now I listen to them because it's a sentimental thing, a small moment that I take serious comfort in.
So how does this relate to autism? You'd be surprised! Right now...I am living on a "Crazy Train" (by Ozzy Osbourne for all you rockers out there). Autism just seems to have moments that make you wonder, moments that sometimes feel like they can break you. And here is the thing, we do get help through ABA and doctors and anyone we can but those people aren't living with it. They suggest things, we try our best. My husband does one thing and I try another....something is missing in the middle though. But what is it? I guess if I knew, I would be rollin' in the dough...well, maybe. In my mind, I just would want to help others who are feeling just like me. And I would be able to help my boy.
Now back to Culture Club. We have had some rough days with behaviors, believe me, it has been a roller coaster. I have needed my mom. So, I turn on my Culture Club in hopes that my little memory will hold me and help me through the struggles. It will get better. I believe it will but the now is hard.
TTFN
Martha
Can you think of a song that represents your life? Maybe there have been several songs....I admit that I can say that about myself. I love music, especially anything from the 80s. I am way into Culture Club right now but that's because of my mom. She loved that band. On the day of her funeral....Culture Club was on the radio. It was like a sign or something. She would reach over and turn the volume up on the radio and oh how we would sing. Now I listen to them because it's a sentimental thing, a small moment that I take serious comfort in.
So how does this relate to autism? You'd be surprised! Right now...I am living on a "Crazy Train" (by Ozzy Osbourne for all you rockers out there). Autism just seems to have moments that make you wonder, moments that sometimes feel like they can break you. And here is the thing, we do get help through ABA and doctors and anyone we can but those people aren't living with it. They suggest things, we try our best. My husband does one thing and I try another....something is missing in the middle though. But what is it? I guess if I knew, I would be rollin' in the dough...well, maybe. In my mind, I just would want to help others who are feeling just like me. And I would be able to help my boy.
Now back to Culture Club. We have had some rough days with behaviors, believe me, it has been a roller coaster. I have needed my mom. So, I turn on my Culture Club in hopes that my little memory will hold me and help me through the struggles. It will get better. I believe it will but the now is hard.
TTFN
Martha
Tuesday, July 31, 2018
Autism and Grief
Hi All,
Been some time since I last wrote...not sure if I even can anymore. I have had a lot of sadness this summer. My mother passed away on July 2nd. It was tragic and very sudden. And I am really still in disbelief. One minute she was gonna make it, next morning...we were talking end of life.
I don't want to write this blog at all but, I have to think about understanding. Allowing others to understand me and to understand a child with special needs. This blog will not be about how I am coping, because to be honest...I am not. This blog will be completely about JB and how he is coping.
Since my mom's passing, behaviors from JB have been really out of control. He snaps every morning around the same time. His behavior is completely aggressive. So aggressive that once he is calm, I need to leave. I need my own moment to chill.
Aggressive....what does that mean? For an autistic child it can mean many things. For my child, it means using foul language, throwing things, hitting, and lots of screaming. My kid has called me many names for the last few weeks. He screams, cries, then screams again. He hits his sister and throws things at me. At this time, we are lucky really because he has no muscle tone in his 85 pound body. But eventually, that will catch up with him and when it does it will be even more worrisome.
So I have asked his behavior company for help. The behaviorist in charge sent me lots of info on how to talk to a child with autism who is grieving but as a person, she said I just need to be blunt and ask him if he misses Grandma. Once we get the answer, then I am to use the information sent to help him cope.
What is that info? (I am sharing the ideas pertinent to JB right now)
I am trying to be strong. I will continue to be strong. I am strong. But...JB's behavior affects me. It hurts and I am already hurting. And the there is this....I have to put me aside. That's just it, you have to put yourself on the back burner. Close the door on your own emotions so you can help your children cope. Whether JB understands or not is a different ball game. I may have to explain it a thousand times....and that's ok because it is my job to help him through it all. And I have to realize that he doesn't understand. What kid would at the age of 8? Crud, I don't understand and I am old!
Grief affects everyone in different ways. It doesn't just go away and it certainly isn't something to simply ignore because, it affects every aspect of life. We will move forward and I will learn...and I will help my kiddo understand. That is all I can do!
TTFN
Martha
Been some time since I last wrote...not sure if I even can anymore. I have had a lot of sadness this summer. My mother passed away on July 2nd. It was tragic and very sudden. And I am really still in disbelief. One minute she was gonna make it, next morning...we were talking end of life.
I don't want to write this blog at all but, I have to think about understanding. Allowing others to understand me and to understand a child with special needs. This blog will not be about how I am coping, because to be honest...I am not. This blog will be completely about JB and how he is coping.
Since my mom's passing, behaviors from JB have been really out of control. He snaps every morning around the same time. His behavior is completely aggressive. So aggressive that once he is calm, I need to leave. I need my own moment to chill.
Aggressive....what does that mean? For an autistic child it can mean many things. For my child, it means using foul language, throwing things, hitting, and lots of screaming. My kid has called me many names for the last few weeks. He screams, cries, then screams again. He hits his sister and throws things at me. At this time, we are lucky really because he has no muscle tone in his 85 pound body. But eventually, that will catch up with him and when it does it will be even more worrisome.
So I have asked his behavior company for help. The behaviorist in charge sent me lots of info on how to talk to a child with autism who is grieving but as a person, she said I just need to be blunt and ask him if he misses Grandma. Once we get the answer, then I am to use the information sent to help him cope.
What is that info? (I am sharing the ideas pertinent to JB right now)
- affirm and reassure by acknowledging the feelings
- be patient
- keep daily routines
- do not try to make things "all better", instead read a book and verbalize
- language needs to be concrete
- do not say "_______ went to heaven" as that means that person may come back like it is a vacation
- people with autism may need to speak about the topic using a social story
- Explain that we all are sad and miss the person that is passed
I am trying to be strong. I will continue to be strong. I am strong. But...JB's behavior affects me. It hurts and I am already hurting. And the there is this....I have to put me aside. That's just it, you have to put yourself on the back burner. Close the door on your own emotions so you can help your children cope. Whether JB understands or not is a different ball game. I may have to explain it a thousand times....and that's ok because it is my job to help him through it all. And I have to realize that he doesn't understand. What kid would at the age of 8? Crud, I don't understand and I am old!
Grief affects everyone in different ways. It doesn't just go away and it certainly isn't something to simply ignore because, it affects every aspect of life. We will move forward and I will learn...and I will help my kiddo understand. That is all I can do!
TTFN
Martha
Saturday, June 9, 2018
Autism is my daily routine
Hi all,
I am posting today because I have been reading a lot of articles about other families who are also dealing with the everyday norms of autism. In reality there is nothing normal about it. For example, some kids have had the experience where they bite an apple and out pops a tooth. Not mine, oh no! Instead, my kid bites his teacher's leg....out pops a tooth! To which his behavior changed from that of anger to one of extreme excitement...We have been waiting for that tooth to fall out forever. So I should be thrilled as this IS supposed to be exciting and yet, it's a drop my head moment.
You see, Autism is daunting. Your heart breaks...and it rejoices. A lot of that has to do with how you see the future because with Autism you HAVE to live in the now. But living in the now makes you think of the future. And sometimes that is very hard. The parent of an Autistic child wonders....will he make it to mainstream, will she be picked on for the way she behaves, will he ever go to high school, will she ever have friends that see beyond the difficulties? I mean, I really could go on and on....
So I thought I would share this list....a list of things that have become my daily routine. Just life in general for me...maybe it will let you see into my world, maybe it will help you see that you aren't alone.
1) Sleeping
Sleeping is different. We go through spurts where we sleep through the night, then we have spurts where we just don't. For instance, in the last 4 days JB has gotten up 4 times a night. Last night was the worst....every hour on the dot. In came my boy who wants to sleep in mama's bed. Instead I walked him back to his room knowing that if I let him sleep in my room, it will become "a thing".
2) Food/Eating
So JB only likes food that is red or orange. Makes it difficult to keep him on a nutritional plan. He eats Doritos, strawberry poptarts, spaghetti-o's, and most Campbells soups because they are soft which means I am always making a separate meal for him. He does not feed himself unless it is finger foods. But we are working on this. He needs lots of prompts and we negotiate....for example, if you do this, then I will that....For some reason he just won't touch silverware. It's a thing.
3) Dressing
I will say that JB has come a very long way here. He now looks for the tags and knows that tags go in the back. But dressing takes 30 minutes and in the rush of the morning, who has time for that?
4) Bathroom
So...JB just started washing his upper body on his own. To get him to do this I drew X's on his arms and belly. His job was to scrub them off and ta-da...JB now washes his upper body alone but he has balancing issues so I scrub his legs to help. Brushing teeth is my job and so is potty. JB can potty by himself but he cannot wipe---if ya catch my drift! Yuck but true!
5) What does it mean to be alone?
JB loves to be around me. I love that...it's special. But when I say, he loves to be around me, I mean that he is always touching me. He follows me all over...if I am in the shower, he is laying on my bed waiting for me. I am rarely alone. Number 5 is a double-edged sword really. I never thought JB would be a touchy-feely kinda kid. So, I am thrilled that he loves being around me but sometimes, well sometimes, I just want to go to the bathroom without company. I would like to eat dinner without feet in my lap.
6) Potty Mouth
JB has an incredible potty mouth. It comes and goes but today, he said the "F" word at least 20 times in five minutes. Like it was nothing. And just completely in context of conversation. The best is when grandma and grandpa are here or when we are out in public. All I can do is smile and shrug my shoulders because, really, what are ya gonna do?
You know, this list really could go on forever. It could. I chose these 6 things because they are huge issues for us right now but with Autism there is always something...always. Autism does not stop. I work all day then come home to more work. It's different work but still work. And it is hard...I am often left with the feeling that no one understands me.
Today at the grocery store, a woman I don't even know, started talking to me. It was just small talk but Autism came up because she was curious about all the packages of Yoo-hoo's (strawberry milk in the form of juice boxes) I was buying. When I told her about JB, she literally hugged me. "You need this, mama," she said.
Guess what? She is right. Sometimes, I just need a hug. Someone to notice me. Because the girl who seems fine is not always fine. Sometimes it's an act that I go through. Autism does not stop. It does not just go away....everyday is a new adventure. Sometimes that adventure is good and sometimes, well, sometimes it is VERY hard. But in the grand scheme of things, it comes down to this.....love. I would not have my life any other way and that, my friends, is the truth!
TTFN,
Martha
I am posting today because I have been reading a lot of articles about other families who are also dealing with the everyday norms of autism. In reality there is nothing normal about it. For example, some kids have had the experience where they bite an apple and out pops a tooth. Not mine, oh no! Instead, my kid bites his teacher's leg....out pops a tooth! To which his behavior changed from that of anger to one of extreme excitement...We have been waiting for that tooth to fall out forever. So I should be thrilled as this IS supposed to be exciting and yet, it's a drop my head moment.
You see, Autism is daunting. Your heart breaks...and it rejoices. A lot of that has to do with how you see the future because with Autism you HAVE to live in the now. But living in the now makes you think of the future. And sometimes that is very hard. The parent of an Autistic child wonders....will he make it to mainstream, will she be picked on for the way she behaves, will he ever go to high school, will she ever have friends that see beyond the difficulties? I mean, I really could go on and on....
So I thought I would share this list....a list of things that have become my daily routine. Just life in general for me...maybe it will let you see into my world, maybe it will help you see that you aren't alone.
1) Sleeping
Sleeping is different. We go through spurts where we sleep through the night, then we have spurts where we just don't. For instance, in the last 4 days JB has gotten up 4 times a night. Last night was the worst....every hour on the dot. In came my boy who wants to sleep in mama's bed. Instead I walked him back to his room knowing that if I let him sleep in my room, it will become "a thing".
2) Food/Eating
So JB only likes food that is red or orange. Makes it difficult to keep him on a nutritional plan. He eats Doritos, strawberry poptarts, spaghetti-o's, and most Campbells soups because they are soft which means I am always making a separate meal for him. He does not feed himself unless it is finger foods. But we are working on this. He needs lots of prompts and we negotiate....for example, if you do this, then I will that....For some reason he just won't touch silverware. It's a thing.
3) Dressing
I will say that JB has come a very long way here. He now looks for the tags and knows that tags go in the back. But dressing takes 30 minutes and in the rush of the morning, who has time for that?
4) Bathroom
So...JB just started washing his upper body on his own. To get him to do this I drew X's on his arms and belly. His job was to scrub them off and ta-da...JB now washes his upper body alone but he has balancing issues so I scrub his legs to help. Brushing teeth is my job and so is potty. JB can potty by himself but he cannot wipe---if ya catch my drift! Yuck but true!
5) What does it mean to be alone?
JB loves to be around me. I love that...it's special. But when I say, he loves to be around me, I mean that he is always touching me. He follows me all over...if I am in the shower, he is laying on my bed waiting for me. I am rarely alone. Number 5 is a double-edged sword really. I never thought JB would be a touchy-feely kinda kid. So, I am thrilled that he loves being around me but sometimes, well sometimes, I just want to go to the bathroom without company. I would like to eat dinner without feet in my lap.
6) Potty Mouth
JB has an incredible potty mouth. It comes and goes but today, he said the "F" word at least 20 times in five minutes. Like it was nothing. And just completely in context of conversation. The best is when grandma and grandpa are here or when we are out in public. All I can do is smile and shrug my shoulders because, really, what are ya gonna do?
You know, this list really could go on forever. It could. I chose these 6 things because they are huge issues for us right now but with Autism there is always something...always. Autism does not stop. I work all day then come home to more work. It's different work but still work. And it is hard...I am often left with the feeling that no one understands me.
Today at the grocery store, a woman I don't even know, started talking to me. It was just small talk but Autism came up because she was curious about all the packages of Yoo-hoo's (strawberry milk in the form of juice boxes) I was buying. When I told her about JB, she literally hugged me. "You need this, mama," she said.
Guess what? She is right. Sometimes, I just need a hug. Someone to notice me. Because the girl who seems fine is not always fine. Sometimes it's an act that I go through. Autism does not stop. It does not just go away....everyday is a new adventure. Sometimes that adventure is good and sometimes, well, sometimes it is VERY hard. But in the grand scheme of things, it comes down to this.....love. I would not have my life any other way and that, my friends, is the truth!
TTFN,
Martha
Saturday, April 7, 2018
It's Autism Awareness Month....
Hello all..
It's Autism awareness month. This time of year brings lots of stories on the news, facebook, twitter...some are just emails from organizations. It's kinda weird because I deal with Autism everyday but because it's in my face more, I think about it so much more than I realize when it's not. That sounds weird BUT I already know Autism daily...the in your face stuff just makes you think even more about it.
Autism is something you have to deal with daily. It's new everyday! And honestly, that's the way the brain works for some Autistic children.
JB has a big IEP (individualized education plan) this week. It's part of his three year evaluation. He has one every year where we report on progress but this one is big...his testing puts him up against the norm. It's scary because this is when your ideas and hopes get questioned...."what if this, what if that, is he able to, will he or won't he...." Sometimes in these things I feel like I am in a fog. It's a little crazy and in some ways something I just cannot explain.
In my line of work (teaching), I know where my son is educationally...but the mom side conflicts with my professional side.....it's this big ball of nerves and a fight within myself. I know but I don't know and...honestly, I sometimes just do not want to know because knowing really hurts. I am human, it's my kid. You do not want to hear that your child struggles at all....but yet, I know! You would think I would be okay with it but no....I am not. It still hurts!
Hurt....Autism is hard, it hurts....it's hard. Damn it's hard enough as it is. I don't want or need anyone to tell me more about it....but it is necessary so we can plan together (parent and school) as a team and move JB forward. That's the only way he will progress...
And so...it's Autism Awareness Month! My hope for this month really is that people will take the time to see....to understand how lovely people are--disability or not! JB is special and my family is so blessed. We accept him as he is....I hope you will too!
TTFN,
Martha
It's Autism awareness month. This time of year brings lots of stories on the news, facebook, twitter...some are just emails from organizations. It's kinda weird because I deal with Autism everyday but because it's in my face more, I think about it so much more than I realize when it's not. That sounds weird BUT I already know Autism daily...the in your face stuff just makes you think even more about it.
Autism is something you have to deal with daily. It's new everyday! And honestly, that's the way the brain works for some Autistic children.
JB has a big IEP (individualized education plan) this week. It's part of his three year evaluation. He has one every year where we report on progress but this one is big...his testing puts him up against the norm. It's scary because this is when your ideas and hopes get questioned...."what if this, what if that, is he able to, will he or won't he...." Sometimes in these things I feel like I am in a fog. It's a little crazy and in some ways something I just cannot explain.
In my line of work (teaching), I know where my son is educationally...but the mom side conflicts with my professional side.....it's this big ball of nerves and a fight within myself. I know but I don't know and...honestly, I sometimes just do not want to know because knowing really hurts. I am human, it's my kid. You do not want to hear that your child struggles at all....but yet, I know! You would think I would be okay with it but no....I am not. It still hurts!
Hurt....Autism is hard, it hurts....it's hard. Damn it's hard enough as it is. I don't want or need anyone to tell me more about it....but it is necessary so we can plan together (parent and school) as a team and move JB forward. That's the only way he will progress...
And so...it's Autism Awareness Month! My hope for this month really is that people will take the time to see....to understand how lovely people are--disability or not! JB is special and my family is so blessed. We accept him as he is....I hope you will too!
TTFN,
Martha
Sunday, March 4, 2018
grey clouds
Hello all....
Been a long while, I know. It's really becoming harder and harder to write. I hate that because my big mouth has a lot to say. I just don't know, though, that I feel up to it anymore.
Autism will always be difficult and it will always be a joy....people can say they understand but they don't know. And yet, I find myself trying to let that all go because the heart of the matter is that people, my peeps, are really 100% trying. They may not live my life but boy, they sure are trying to have an open mind about it. And I love that so much because well....that little bit of trying, helps me understand that people do care.
Something every parent of a special needs child should know is that the stress never leaves. It really never goes away....there is always a new worry. Like right now, I am working on filling out paperwork about my JB because he is due for his triennial. It's an assessment that will measure his progress and compare it to "the norm"....I gotta tell you all, I don't wanna know. I don't. I DON'T!!!!
It's so hard to hear this stuff...I know it's way necessary. I know what they are going to report on...I know this information is necessary to hear. I know it's good, that I need to hear it, but think about it.....I am a mama....hearing your child has difficulties is not easy to hear. I know already, really I do but please when you talk to me....let me know you love and care about my fella. That he makes you laugh, that his smile kills you....that he is a treasure because that's what he is.
So grey clouds? What does that title mean? Well, life is hard with autism and then it gets even harder when other things go wrong...and it seems so much worse because I am already under so much stress. A couple weeks ago, my husband had an allergic reaction that actually almost killed him. He had to sign a paper that stated a procedure necessary to help him, could actually kill him. I am not sure that people understand how serious this event was...but then, maybe I am making more out of it because it just added to an already crazy life!
It could also be that everything has happened all at once and guess what? Then you think about how a grey cloud is always over you....F that! I think that sometimes the stresses of everyday life, of everyday Autism, makes everything else seem 100 times more difficult. You find out how strong you are during these times, and yet you also find out how much support you need. I think I will always need support. I think I will always need to understand that others do want to help me....life goes on and happens. It's just a matter of how I deal with it. How can I push those clouds away so they don't bury me? Some days....some days I can do it! I can! But some days, well, I cannot. I just cannot!
But don't worry peeps! I will always keep fighting the fight to be a strong me and when I need you...I will do better to tell you!
TTFN
Martha
Been a long while, I know. It's really becoming harder and harder to write. I hate that because my big mouth has a lot to say. I just don't know, though, that I feel up to it anymore.
Autism will always be difficult and it will always be a joy....people can say they understand but they don't know. And yet, I find myself trying to let that all go because the heart of the matter is that people, my peeps, are really 100% trying. They may not live my life but boy, they sure are trying to have an open mind about it. And I love that so much because well....that little bit of trying, helps me understand that people do care.
Something every parent of a special needs child should know is that the stress never leaves. It really never goes away....there is always a new worry. Like right now, I am working on filling out paperwork about my JB because he is due for his triennial. It's an assessment that will measure his progress and compare it to "the norm"....I gotta tell you all, I don't wanna know. I don't. I DON'T!!!!
It's so hard to hear this stuff...I know it's way necessary. I know what they are going to report on...I know this information is necessary to hear. I know it's good, that I need to hear it, but think about it.....I am a mama....hearing your child has difficulties is not easy to hear. I know already, really I do but please when you talk to me....let me know you love and care about my fella. That he makes you laugh, that his smile kills you....that he is a treasure because that's what he is.
So grey clouds? What does that title mean? Well, life is hard with autism and then it gets even harder when other things go wrong...and it seems so much worse because I am already under so much stress. A couple weeks ago, my husband had an allergic reaction that actually almost killed him. He had to sign a paper that stated a procedure necessary to help him, could actually kill him. I am not sure that people understand how serious this event was...but then, maybe I am making more out of it because it just added to an already crazy life!
It could also be that everything has happened all at once and guess what? Then you think about how a grey cloud is always over you....F that! I think that sometimes the stresses of everyday life, of everyday Autism, makes everything else seem 100 times more difficult. You find out how strong you are during these times, and yet you also find out how much support you need. I think I will always need support. I think I will always need to understand that others do want to help me....life goes on and happens. It's just a matter of how I deal with it. How can I push those clouds away so they don't bury me? Some days....some days I can do it! I can! But some days, well, I cannot. I just cannot!
But don't worry peeps! I will always keep fighting the fight to be a strong me and when I need you...I will do better to tell you!
TTFN
Martha
Saturday, February 3, 2018
Riddle me this, riddle me that!
Hi all.....
So a local TV network asked for pictures from Disneyland today....I actually sent one in. And it was the first one they showed...but seeing the picture on TV really brought up feelings. Deep feelings. The last time my family went to Disneyland was right before JB got diagnosed with Autism. I can remember it so vividly. I remember how I was feeling. I just wanted JB to show some kind of emotion. But, he just was so complacent....not showing happiness nor sadness....I had been fighting so hard to find out what was wrong because I knew something was off...just completely off. As a mom, I kept digging for answers that I really did not want to hear but I couldn't just think of me....
So, let me just share that my cousin works for Disney. He got us tickets which I am so thankful for....hell, Disneyland is beyond expensive. He gave us a plan...where we should go first...then later....I think we spent most of our day though, at California Adventure....the perfect spot to meet Mickey. I remember it so clearly. Being close to last in line and begging the attendants to Mickey to make sure we could see him.....and it did happen.
For the first time, my boy showed emotion. Seeing Mickey sparked an emotion. He laughed, he smiled, he begged for more.....For me, it was the first time I had seen a reaction like that from JB. I cried...literally cried.....I was so touched by the time Mickey spent making my boy happy...that I cried.
So a local TV network asked for pictures from Disneyland today....I actually sent one in. And it was the first one they showed...but seeing the picture on TV really brought up feelings. Deep feelings. The last time my family went to Disneyland was right before JB got diagnosed with Autism. I can remember it so vividly. I remember how I was feeling. I just wanted JB to show some kind of emotion. But, he just was so complacent....not showing happiness nor sadness....I had been fighting so hard to find out what was wrong because I knew something was off...just completely off. As a mom, I kept digging for answers that I really did not want to hear but I couldn't just think of me....
So, let me just share that my cousin works for Disney. He got us tickets which I am so thankful for....hell, Disneyland is beyond expensive. He gave us a plan...where we should go first...then later....I think we spent most of our day though, at California Adventure....the perfect spot to meet Mickey. I remember it so clearly. Being close to last in line and begging the attendants to Mickey to make sure we could see him.....and it did happen.
For the first time, my boy showed emotion. Seeing Mickey sparked an emotion. He laughed, he smiled, he begged for more.....For me, it was the first time I had seen a reaction like that from JB. I cried...literally cried.....I was so touched by the time Mickey spent making my boy happy...that I cried.
Two weeks later...JB was diagnosed with Autism....
This is one of many favorite memories...so far. Seems silly but I can't help that....it has HUGE meaning for me. My boy showed emotion, something I thought would never happen. Something I thought was not possible. I was told that Autism meant no love....that a child with Autism couldn't show love. That is so not true.....
Kids with Autism show love in their own way. Love really is there, you just need to see it because it isn't always easy to see. This journey is hard. It is a riddle that you can't solve...but you must see the joy. JB cracks me up...daily. I don't always feel love from him....he says mean things, things that bring me down....but, he loves me. He knows that mom is his number one fan. He hurts me for that reason and then, he loves me for that reason. Love defeats the riddle...makes you not care about the riddle....the riddle of Autism is difficult. It is up and down. It makes you deal with things...hard things, tough things. But I would not have it any other way....because JB was meant for me and I was meant for him.
TTFN
Martha
Wednesday, January 3, 2018
Dear Me...
Hi all,
This post for me is a little different. I want to share a letter that I wrote to myself on a pretty difficult day with Autism. JB was definitely overwhelmed or overstimulated or simply just not in control of his anger. The holidays are tough in many ways....for JB it takes a bit for him to process what is going on. Winter break brought many changes to someone who depends so much on a routine. Anyway, after a bout with behaviors, JB fell asleep and during that time I wrote the following letter to myself as a reminder and a way to pick myself up. Here goes:
Dear Me,
You are okay, absolutely okay! I know that sometimes Autism can be so very hard and draining. I know you put on a good front, that maybe no one would ever know how you are feeling inside. I know that you don't always understand what causes JB to act the way he does or why Autism snaps the way it does! I know there are days you wish you had answers and yet, there aren't any.
Some days are very hard. Some days are as easy as pie. Autism is your roller coaster ride. Sometimes you want to be on that ride and sometimes, well, you don't. It's an emotional journey and the hurt sometimes really hurts. But, you can't choose to dwell on that.
So right now I am taking a chance on you. To tell you that you are okay. And even when you aren't, it's okay! You deserve a moment, to take a breath before pushing forward. And maybe more than that, you deserve to CHOOSE YOU!!!!!
This year, I challenge you to be aware of you and to take care of you. To take more than just one breath....and to let yourself be okay with that because a better you is better for everyone! It won't be easy because you are you....But in knowing you, I also know that you are always up for a challenge.
Please know that you will still have days...good days, bad days and that is okay! All I am asking of you is to take some time just so you can regroup! That I think you can do!
With love,
Me
I have read this letter several times since I wrote it. I keep thinking about it. So often, I am last on my own list and when I get a rare moment I don't have any energy. I say "Oh well!" and I just let that be the way it is! NO MORE!!! I gotta figure it out because someway, somehow I do need to start choosing me a little more often! Maybe I won't be alone in taking on this challenge.....stay strong everyone!
TTFN and Happy New Year
Martha
This post for me is a little different. I want to share a letter that I wrote to myself on a pretty difficult day with Autism. JB was definitely overwhelmed or overstimulated or simply just not in control of his anger. The holidays are tough in many ways....for JB it takes a bit for him to process what is going on. Winter break brought many changes to someone who depends so much on a routine. Anyway, after a bout with behaviors, JB fell asleep and during that time I wrote the following letter to myself as a reminder and a way to pick myself up. Here goes:
Dear Me,
You are okay, absolutely okay! I know that sometimes Autism can be so very hard and draining. I know you put on a good front, that maybe no one would ever know how you are feeling inside. I know that you don't always understand what causes JB to act the way he does or why Autism snaps the way it does! I know there are days you wish you had answers and yet, there aren't any.
Some days are very hard. Some days are as easy as pie. Autism is your roller coaster ride. Sometimes you want to be on that ride and sometimes, well, you don't. It's an emotional journey and the hurt sometimes really hurts. But, you can't choose to dwell on that.
So right now I am taking a chance on you. To tell you that you are okay. And even when you aren't, it's okay! You deserve a moment, to take a breath before pushing forward. And maybe more than that, you deserve to CHOOSE YOU!!!!!
This year, I challenge you to be aware of you and to take care of you. To take more than just one breath....and to let yourself be okay with that because a better you is better for everyone! It won't be easy because you are you....But in knowing you, I also know that you are always up for a challenge.
Please know that you will still have days...good days, bad days and that is okay! All I am asking of you is to take some time just so you can regroup! That I think you can do!
With love,
Me
I have read this letter several times since I wrote it. I keep thinking about it. So often, I am last on my own list and when I get a rare moment I don't have any energy. I say "Oh well!" and I just let that be the way it is! NO MORE!!! I gotta figure it out because someway, somehow I do need to start choosing me a little more often! Maybe I won't be alone in taking on this challenge.....stay strong everyone!
TTFN and Happy New Year
Martha