No matter what your situation, there is always a bright side, right? I know I spend plenty of time venting about the hard parts of autism land, but the truth is...there are some times when Diva Girl's autism has been a blessing of its own kind. Curious? Read on, my friends.
1. This weekend, Diva Girl got sick on the day of her birthday party. She ran 103 fever and we had to cancel the whole shebang. And you know what? She wasn't a bit disappointed! So far, Diva Girl hasn't really gotten the whole concept of some fun event happening sometime in her future. The glory of that is that she is never disappointed when things don't work out! We never have to console her because a playdate fell through or an event got rained out. Sure it's a small thing, but let me tell you, I can't imagine how horrible it would have been to have had to tell a kid "Sorry, not only are you sick but that means you can't have your birthday party!" It's called silver lining.
2. I've gotten to the point where I've become fairly confident with my parenting out in public. Because you know, if someone ever gives me attitude about how she is behaving or how I parent, I can just tell them they don't have a stinking clue and continue to ignore them and go on my merry way. I would probably not be that way if I just had typical kiddos, I think I would care more what people thought. Diva Girl gives me the gift of confidence.
3. I get to enjoy so many little victories! Every word she says, every goal she meets, no matter how small, is cause for celebration. For two years I took so many things for granted. Now I take such pride and joy with every accomplishment, and you know what? It's kind of fun! I even find myself celebrating every milestone with Rascal and enjoying his "babyhood" in a way that I didn't with Gabriella. Pride has taken on new meaning.
4. We have yet to hit the "Why?" stage. You know, that annoying typical 4 year old thing. You tell them something and they say "why?", and you answer and they say "why?" and you answer and...you see where this is going. Drives me nuts. But we still live in unquestioning bliss! Sure, I want her to understand questions well soon enough, but for now I really don't mind having that really annoyingly exhausting phase delayed.
5.There is no real deception in Diva Girl. Sure, if I say "no" to something she just goes to someone else and asks...but she does that right in front of me, it's nothing sneaky. The girl can be defiant, but at least I don't have to worry about lies.
6. Autism has opened me to a whole world of amazing people. I've met amazing women that I would otherwise never have crossed paths with. I've discovered that people are tremendously generous. I've seen people be touched by Diva Girl's story, and have been downright shocked by those who have chosen to donate so that she could get the help she needs. Some of the most wonderful people I know are either on the spectrum or related to someone that is.
I'm sure that there are some more "benefits", but I am done for now. My little girl is snuggling up and making it hard to type...and who can resist a 45 pound cat?
Monday, January 31, 2011
Saturday, January 22, 2011
Four Years Old
My first glimpse of perfection. She was so tiny and angelic, I could hardly believe that she was mine. I thought to myself- "I get to keep her? I get to take her home? Are they sure I'm allowed?" It was terrifying and amazing, as life with her often is.
But I grew into being a mommy, and watched her grow in awe. Husband and I could hardly believe how lucky we were. Oh, the mountains of pictures we took in those early months! The adorable yawns, the bathtime mohawks, the first smiles...all evidence of the fact that we had created the most beautiful child that ever lived.
I mean, really...doesn't this face just melt your heart?
Then I blinked and I had a cake eating, walking, talking, one year old!
And whether I liked it or not, she grew. She was just pure sunshine.
Who could resist this grin?
Or this wink?
The next thing I knew, it was birthday number two!
That's when life got REALLY exciting!
And maybe just a tad bit messy...
But she discovered her love of all thinks pink and sparkly and fairyish and beautiful.
Suddenly, she was three.
She had to learn how to share, even when she wasn't a big fan of the idea
She's learned more than I can even guess, and she shows us more each day
She makes us laugh every day!
And she blows me away every day with her beauty, humor, love, and her ability to keep me guessing.
Baby girl, I love you more than you love yourself, as hard as that is to believe...
Four years and I'm still thinking "Really, I get to keep her? Wow" Happy Birthday to the most wonderful little girl there is!
Diva Girl ~ January 23,2007
Thursday, January 20, 2011
Decisions, decisions
I've started several posts in the past few days, and deleted them all. None of them said anything of real value or importance, and I was trying too hard to say something of some significance. Yes, I'm a perfectionist even when writing a blog post.
Tonight? I've decided to write about something of REAL significance to me.
Recently, I made the decision to stop feeling badly because we can't afford biomedical treatments. I wasn't sure if I wanted them, I just knew that I felt badly that they aren't even an option. I kept thinking "What if somewhere in that lies the key for her? What if I could help her?" But lately, those questions seem to feel just a bit silly. Why? Because I'm seeing the progress right before my very eyes. I'm not worrying about having made the wrong decision putting her in BCA, I'm not agonizing over what we could be doing...I'm just watching her in awe.
We're hearing her say sentences. Real, unprompted sentences! "I want strawberries!" "I see water!" Mama is freaking out!!! Oh, and play...we are seeing imaginative play! She's hitting less, she's talking more, she's on the cusp of being ready to potty train...she could probably jump buildings with a single bound, if she really wanted to.
What we're doing is working for her. It's working for us. I have no regrets.
My only hope is that we can keep her there. As we approach March we will have to decide if we can do another year at BCA. I simply can't imagine life without it, but I have no idea if we can commit to another year. As always, I want the best for our little girl. Now that I'm 100% positive that we're on the right path, I can't stand the thought of it being pulled away from her.
Actually, I have another hope...I hope that other parents can feel the same certainty I feel right now, whatever path they embark on with their kids. I know of no one that has the pocketbook to pursue every treatment out there for their child, and I know how tough it can be trying different things and hoping that it works. And agonizing over what to try next. I know we don't have it all figured out, but I am happy with where we are right now. Wish that everyone could feel the same!
Tonight? I've decided to write about something of REAL significance to me.
Recently, I made the decision to stop feeling badly because we can't afford biomedical treatments. I wasn't sure if I wanted them, I just knew that I felt badly that they aren't even an option. I kept thinking "What if somewhere in that lies the key for her? What if I could help her?" But lately, those questions seem to feel just a bit silly. Why? Because I'm seeing the progress right before my very eyes. I'm not worrying about having made the wrong decision putting her in BCA, I'm not agonizing over what we could be doing...I'm just watching her in awe.
We're hearing her say sentences. Real, unprompted sentences! "I want strawberries!" "I see water!" Mama is freaking out!!! Oh, and play...we are seeing imaginative play! She's hitting less, she's talking more, she's on the cusp of being ready to potty train...she could probably jump buildings with a single bound, if she really wanted to.
What we're doing is working for her. It's working for us. I have no regrets.
My only hope is that we can keep her there. As we approach March we will have to decide if we can do another year at BCA. I simply can't imagine life without it, but I have no idea if we can commit to another year. As always, I want the best for our little girl. Now that I'm 100% positive that we're on the right path, I can't stand the thought of it being pulled away from her.
Actually, I have another hope...I hope that other parents can feel the same certainty I feel right now, whatever path they embark on with their kids. I know of no one that has the pocketbook to pursue every treatment out there for their child, and I know how tough it can be trying different things and hoping that it works. And agonizing over what to try next. I know we don't have it all figured out, but I am happy with where we are right now. Wish that everyone could feel the same!
Saturday, January 15, 2011
Highly Overrated
Another semester begins, and with it a whole new round of classmates and professors. I'm finding that all of my professors begin their classes the same way in the Education department. "Let's go around the room and say your name, area of study, and why you are in education!" And around the room we go, with the answers all blending together..."I've always liked kids", "I've always worked with kids", and "I've always felt like teaching is my calling" are popular answers. Then we get to me.
"I'm Mama, doing Special Education, and I'm here because of my daughter. She is on the autism spectrum and I want to be her teacher, as well as help other kids who are on the spectrum."
That answer always gets some attention.
I've gotten to have several conversations due to my little introduction, but two in particular have caused some thinking on my part. Both times I was asked the question "Is she high functioning or low functioning?"
I never know what to say to that.
What is high functioning? Someone who barely seems autistic? Someone who speaks well, but has some social problems? Someone who is in a "regular" class in public school? I really don't know what "high functioning" looks like. On the other hand, what is low functioning? Someone who stims all the time? Someone who is non-verbal? To be honest, this always conjurs the image of a child who sits staring off and rocking, completely oblivious to the world around them.
I don't see my daughter in either of these terms. So many people tell me that they know someone who was diagnosed with "high functioning autsim" and that always throws me for a loop...what doctor uses that as a label? It certainly isn't in the DSM-V. No one with any sort of authority has ever told me that she is "severe" or "low functioning" or "high functioning". So when people ask, I always pause and sort of stutter. I want to tell them that it isn't that simple. I want to tell them that high and low are two ends of a very wide spectrum. That I can't look at my smart, funny, headstrong, improving-by-the-day, little girl and say that she is low functioning. But I also know that in the eyes of most everyone, she would not be considered high functioning.
So I chose to say that she is neither, and that those terms are highly over rated. Those terms have no purpose in my life, and do no justice to my girl. They don't mean a darn thing in regards to her future success in life, and they certainly don't change the way I treat her.
Besides, functioning isn't my goal. How about words like "thriving", "shining", and "happy"? Now those are words that I'm ready to label her any day...
"I'm Mama, doing Special Education, and I'm here because of my daughter. She is on the autism spectrum and I want to be her teacher, as well as help other kids who are on the spectrum."
That answer always gets some attention.
I've gotten to have several conversations due to my little introduction, but two in particular have caused some thinking on my part. Both times I was asked the question "Is she high functioning or low functioning?"
I never know what to say to that.
What is high functioning? Someone who barely seems autistic? Someone who speaks well, but has some social problems? Someone who is in a "regular" class in public school? I really don't know what "high functioning" looks like. On the other hand, what is low functioning? Someone who stims all the time? Someone who is non-verbal? To be honest, this always conjurs the image of a child who sits staring off and rocking, completely oblivious to the world around them.
I don't see my daughter in either of these terms. So many people tell me that they know someone who was diagnosed with "high functioning autsim" and that always throws me for a loop...what doctor uses that as a label? It certainly isn't in the DSM-V. No one with any sort of authority has ever told me that she is "severe" or "low functioning" or "high functioning". So when people ask, I always pause and sort of stutter. I want to tell them that it isn't that simple. I want to tell them that high and low are two ends of a very wide spectrum. That I can't look at my smart, funny, headstrong, improving-by-the-day, little girl and say that she is low functioning. But I also know that in the eyes of most everyone, she would not be considered high functioning.
So I chose to say that she is neither, and that those terms are highly over rated. Those terms have no purpose in my life, and do no justice to my girl. They don't mean a darn thing in regards to her future success in life, and they certainly don't change the way I treat her.
Besides, functioning isn't my goal. How about words like "thriving", "shining", and "happy"? Now those are words that I'm ready to label her any day...
Friday, January 7, 2011
Resolving, Evolving
It's been almost a week since a new year began, and like most other optimistic human beings out there, I made a few resolutions. Since I am doing pretty well with them and feel more sure than ever that I am on the right path, I am going to share a few with you today.
First resolution: Stop caring so much what people think of me.
I have had a serious problem with this. Maybe it comes from years of being picked on, picked last, and picked apart. Maybe it comes from the fact that I know that I am not the best in social situations (more on learning to embrace my own autisty traits in a forthcoming post). Whatever the reason, I have always yearned for people to like me, to approve of me (lets be honest- most other people do too). Of course, this habit did not go well with the fact that my face is an open book and I have a tendency to be far too blunt. So I'd say something and then agonize over having offended someone. Or post something on facebook and worry what people thought of me as a mother. What really makes no sense is that I even want people that I don't particularly like to still like me! So this year I have decided to embrace the fact that I am unique and opinionated and sometimes offensive. If you want to be friends...great! If not...oh well, I'm too busy for you anways. If you don't like my parenting style...well, just keep it to yourself.
Second resolution: Be nicer to my kids.
Yes, I needed that to be a resolution. Stop being so shocked, I know I'm not the only one! My attitude towards the end of the year just got plain ugly. I was stressed out and taking it out on everyone, including my poor kiddos. Yes, they were part of the stress, but I just made things worse. Turns out when I yell, it doesn't fix anything. And when I swat Diva Girl, she just gets more aggressive. I knew better, and I swore that I would never parent that way. So I've started turning up the praise, spending more time blowing bubbles and tickling, and what do you know...peace reigns in my household. Sometimes taking a big dose of your own advice can really do wonders.
Third resolution: Start making more decisions for Diva Girl.
This was the hardest one, and the most involved resolution of all. Last year, when Diva Girl was newly diagnosed and I had a new baby, I was completely and utterly clueless. I needed HELP, and I was overwhelmed by the big bad world of autism research. My research was all over the place, and I didn't know what I really thought about the best way to help Diva Girl. After visiting BCA, I knew we needed to put Diva Girl there, and that in and of itself was a very hard decision. But once she was there? I sort of thought "YES!! These people have saved me from my world of clulessness. If I just listen to them and do what they say, everything will be ok." And while BCA has worked miracles...they are not raising my child. I am. Sometimes I need to ask questions and make decisions to move her therapy in a certain directions and not be so afraid. So my next post will be about my first big decision in regard to her therapy. It wasn't easy, but I feel good about it. Consider me ready to jump back into the world of research...on my own terms, of course.
Fourth Resolution: Get back to the things I love.
Dates with my husband. La Leche League meetings. Cloth diapering, greener living, healthier eating. All things that I am passionate about but pushed to the side because I was so stressed with school. Yes, this semester will be even more hectic. But I don't want to spend the next 2.5 years stressed out and miserable. I need to make the time to focus on things I enjoy or I will not only fail in this resolution, but I will fail in all the others as well. Some days I just need to get my head out of the books, my mind out of Autism land, and focus on something like converting my old flat diapers into unpaper towels (and if you understand what I'm talking about, let me know so we can talk about that stuff together!)
So that's it. Or at least, that's all the resolutions I'm telling you. The other ones are far more embarrassing.
First resolution: Stop caring so much what people think of me.
I have had a serious problem with this. Maybe it comes from years of being picked on, picked last, and picked apart. Maybe it comes from the fact that I know that I am not the best in social situations (more on learning to embrace my own autisty traits in a forthcoming post). Whatever the reason, I have always yearned for people to like me, to approve of me (lets be honest- most other people do too). Of course, this habit did not go well with the fact that my face is an open book and I have a tendency to be far too blunt. So I'd say something and then agonize over having offended someone. Or post something on facebook and worry what people thought of me as a mother. What really makes no sense is that I even want people that I don't particularly like to still like me! So this year I have decided to embrace the fact that I am unique and opinionated and sometimes offensive. If you want to be friends...great! If not...oh well, I'm too busy for you anways. If you don't like my parenting style...well, just keep it to yourself.
Second resolution: Be nicer to my kids.
Yes, I needed that to be a resolution. Stop being so shocked, I know I'm not the only one! My attitude towards the end of the year just got plain ugly. I was stressed out and taking it out on everyone, including my poor kiddos. Yes, they were part of the stress, but I just made things worse. Turns out when I yell, it doesn't fix anything. And when I swat Diva Girl, she just gets more aggressive. I knew better, and I swore that I would never parent that way. So I've started turning up the praise, spending more time blowing bubbles and tickling, and what do you know...peace reigns in my household. Sometimes taking a big dose of your own advice can really do wonders.
Third resolution: Start making more decisions for Diva Girl.
This was the hardest one, and the most involved resolution of all. Last year, when Diva Girl was newly diagnosed and I had a new baby, I was completely and utterly clueless. I needed HELP, and I was overwhelmed by the big bad world of autism research. My research was all over the place, and I didn't know what I really thought about the best way to help Diva Girl. After visiting BCA, I knew we needed to put Diva Girl there, and that in and of itself was a very hard decision. But once she was there? I sort of thought "YES!! These people have saved me from my world of clulessness. If I just listen to them and do what they say, everything will be ok." And while BCA has worked miracles...they are not raising my child. I am. Sometimes I need to ask questions and make decisions to move her therapy in a certain directions and not be so afraid. So my next post will be about my first big decision in regard to her therapy. It wasn't easy, but I feel good about it. Consider me ready to jump back into the world of research...on my own terms, of course.
Fourth Resolution: Get back to the things I love.
Dates with my husband. La Leche League meetings. Cloth diapering, greener living, healthier eating. All things that I am passionate about but pushed to the side because I was so stressed with school. Yes, this semester will be even more hectic. But I don't want to spend the next 2.5 years stressed out and miserable. I need to make the time to focus on things I enjoy or I will not only fail in this resolution, but I will fail in all the others as well. Some days I just need to get my head out of the books, my mind out of Autism land, and focus on something like converting my old flat diapers into unpaper towels (and if you understand what I'm talking about, let me know so we can talk about that stuff together!)
So that's it. Or at least, that's all the resolutions I'm telling you. The other ones are far more embarrassing.
Sunday, January 2, 2011
All About The Boy
A whole blog post devoted to him, and it's not about the crazy way he came into this world! But believe it or not, this past week I've been much more concerned about my little guy than Diva Girl.
Yes, I'm a bit paranoid when it comes to Robbie. I worry about his development, like all moms who have a firstborn on the spectrum. I remember when developmental milestones were just something fun and new...now I find myself saying things like "He can clap! Good gross motor imitation!" Luckily, Rascal has given me no cause for concern. He smiles at everyone he meets(and I swear he flirts with all the ladies) and claps and says "bubbu" (bubbles) and "up" and is already taking steps at 10 months old. The kid is spot on where he needs to be and I couldn't be prouder (or more relieved).
But then this week happened and got me all stressed out and freaking out. Maybe two weeks ago he started waking up just a bit more in the night. I chalked it up to teething and the fact that he'd started trying to walk, knowing that hitting developmental milestones can actually mess with sleep. Something that I was taking note of, but not something to worry about too much. Next thing I know it's Christmas and we are at my parents house and life is chaos. Not surprisingly, he slept horribly the first night. Second night was no picnic, and third night had me concerned. Then things took an ugly turn after Nate left to be the speaker at a Youth retreat.
Screaming. Top-of-your-lungs, painful, half hour long screaming. He wouldn't nurse, he wouldn't let me hold him close. He arched his back and just wailed and flopped around all over the bed. He did this for the hour or so that I tried to get him to sleep. He woke up ever hour to an hour and a half ALL night long...screaming. Naps even became practically nonexistent. I found myself in the middle of a sleep deprived nightmare.
To say that I was concerned would be a gross understatement. I was freaking out. It was breaking my heart to hear him and not know what was wrong or how to fix it. Over the course of five days I tried to figure out what was wrong. My mind saw signs of food issues, possible seizures, ear infections...but I had no way of knowing. I can't tell you what that last night in Memphis was like. He screamed from 2:20-3:30 AM and I just held him and cried along with him. I vowed to take him to the doctor on Monday. When I talked to Husband about it over the phone, I cried, and said the words that terrified me as I said them "I just hope I wake up tomorrow and he goes back to normal". I said those words about Diva Girl for months, and I felt this panic rising in me as I said them about my son. Totally different situation, but still...I couldn't help but be afraid.
Then yesterday we came home, along with Husband. One of the first things Rascal did was take a nice nap with his daddy. I was dreading the evening, but much to my surprise he fell asleep with very little fuss. He woke up 3 times in the night, nursed back to sleep, and with only minimal crying. Today? Two naps. And only whimpers as I patted his back and he drifted off to sleep this evening. Tears were rolling down my cheeks as I watched him sleeping peacefully. A heaviness has been lifted from me and I am just so glad to see my baby go back to normal.
Best I can tell, he just needed to be home again with his family all together. I don't really understand it, but I'm all too happy to accept it. I pray that nothing like this ever happens again, because I'm not sure my frail psyche could handle it. I'm just glad to have my sweet baby boy back...my sleeping, smiling Rascal.
Yes, I'm a bit paranoid when it comes to Robbie. I worry about his development, like all moms who have a firstborn on the spectrum. I remember when developmental milestones were just something fun and new...now I find myself saying things like "He can clap! Good gross motor imitation!" Luckily, Rascal has given me no cause for concern. He smiles at everyone he meets(and I swear he flirts with all the ladies) and claps and says "bubbu" (bubbles) and "up" and is already taking steps at 10 months old. The kid is spot on where he needs to be and I couldn't be prouder (or more relieved).
But then this week happened and got me all stressed out and freaking out. Maybe two weeks ago he started waking up just a bit more in the night. I chalked it up to teething and the fact that he'd started trying to walk, knowing that hitting developmental milestones can actually mess with sleep. Something that I was taking note of, but not something to worry about too much. Next thing I know it's Christmas and we are at my parents house and life is chaos. Not surprisingly, he slept horribly the first night. Second night was no picnic, and third night had me concerned. Then things took an ugly turn after Nate left to be the speaker at a Youth retreat.
Screaming. Top-of-your-lungs, painful, half hour long screaming. He wouldn't nurse, he wouldn't let me hold him close. He arched his back and just wailed and flopped around all over the bed. He did this for the hour or so that I tried to get him to sleep. He woke up ever hour to an hour and a half ALL night long...screaming. Naps even became practically nonexistent. I found myself in the middle of a sleep deprived nightmare.
To say that I was concerned would be a gross understatement. I was freaking out. It was breaking my heart to hear him and not know what was wrong or how to fix it. Over the course of five days I tried to figure out what was wrong. My mind saw signs of food issues, possible seizures, ear infections...but I had no way of knowing. I can't tell you what that last night in Memphis was like. He screamed from 2:20-3:30 AM and I just held him and cried along with him. I vowed to take him to the doctor on Monday. When I talked to Husband about it over the phone, I cried, and said the words that terrified me as I said them "I just hope I wake up tomorrow and he goes back to normal". I said those words about Diva Girl for months, and I felt this panic rising in me as I said them about my son. Totally different situation, but still...I couldn't help but be afraid.
Then yesterday we came home, along with Husband. One of the first things Rascal did was take a nice nap with his daddy. I was dreading the evening, but much to my surprise he fell asleep with very little fuss. He woke up 3 times in the night, nursed back to sleep, and with only minimal crying. Today? Two naps. And only whimpers as I patted his back and he drifted off to sleep this evening. Tears were rolling down my cheeks as I watched him sleeping peacefully. A heaviness has been lifted from me and I am just so glad to see my baby go back to normal.
Best I can tell, he just needed to be home again with his family all together. I don't really understand it, but I'm all too happy to accept it. I pray that nothing like this ever happens again, because I'm not sure my frail psyche could handle it. I'm just glad to have my sweet baby boy back...my sleeping, smiling Rascal.
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