Artist: Daddy!
John: Yes *Artist*?
Artist: Push play!
John: You want me to push play on your video?
Artist: Yes, push play, boos coos.
John: Ok, just a minute, and I'll push play on your blues clues video.
Artist: K. *three second pause** DADDY!
J: Yes, *Artist*?
Artist: Have Question!
J: You have a question?
Artist: Yes.
J: What is it?
Artist: Push play on boos coos movie, peeze.
Changes ahead
When I began this blog, it was a way to let distant family read cute stories about the boys--things that were worth sharing, but not really something you would take the time to call four or five people (or more!) and tell them about. But the internet is forever, and with the boys' recent diagnoses, the blog has become much more personal--and has information that a teenage boy may not want a classmate to be able to google and find. So I'm going to make some changes to the blog. Nothing (I don't think) will be deleted, but I will be systematically removing the boys' names from the posts. I will also be creating a new blog soon. Actually, I've already created it, I just haven't quite organized exactly how it's going to be differentiated from this one. My brain isn't working as well as I'd like :D
I think, though, that this blog will continue to be focused on the boys and stories about them, and the other will be focused more on their triumphs and struggles, as well as ours. Right now, it's hard to think clearly, and everything is still a little shaky in my head. But these things I know for sure:
1. My boys are more than their diagnoses. There is no way a label or a test or a piece of paper can explain who they are, any more than saying they are blondes would define them. Their respective diagnoses are what they have, not who they are. And they are descriptors, NOT excuses.
2. I love my boys, and I will move heaven and earth to help them reach their full potential.
3. I may not be the mom they need. I am the mom they HAVE, and I will work towards becoming the mom they need. (Thanks again, Tabitha, for this life lesson. Even if you don't remember it :D )
So, there are changes ahead. Massive changes. But the changes for the blog should be minor :D
I think, though, that this blog will continue to be focused on the boys and stories about them, and the other will be focused more on their triumphs and struggles, as well as ours. Right now, it's hard to think clearly, and everything is still a little shaky in my head. But these things I know for sure:
1. My boys are more than their diagnoses. There is no way a label or a test or a piece of paper can explain who they are, any more than saying they are blondes would define them. Their respective diagnoses are what they have, not who they are. And they are descriptors, NOT excuses.
2. I love my boys, and I will move heaven and earth to help them reach their full potential.
3. I may not be the mom they need. I am the mom they HAVE, and I will work towards becoming the mom they need. (Thanks again, Tabitha, for this life lesson. Even if you don't remember it :D )
So, there are changes ahead. Massive changes. But the changes for the blog should be minor :D
To Kahlil Joseph
Too many years ago to count, I acted in a show you directed. I pulled from the depths of my soul to give you everything I had to bring your character to life. And the notes you gave after the performance, while Cindy and I were sobbing in exhaustion in each others' arms, with our friends who had watched the performance-most also crying- gathered around us, were, "ok, good, but if you could just give me more . . ."
Thank you. My children need me to find reserves of strength I didn't know I had, and energy to help them when I thought I was running on empty. YOU taught me that there's always more to give, even (perhaps especially) when you think there's not.
Forget Kindergarten--Everything I need to know I learned in the theatre.
Thank you. My children need me to find reserves of strength I didn't know I had, and energy to help them when I thought I was running on empty. YOU taught me that there's always more to give, even (perhaps especially) when you think there's not.
Forget Kindergarten--Everything I need to know I learned in the theatre.
I cried tonight.
It caught me utterly and completely by surprise, and yet there was no surprise at all. Actually, I wanted to cry so badly last week that I scheduled a time for it. I promised myself that if I could just get through the morning, and get the twins to therapy, and then get them to preschool, I could cry for a solid 90 minutes, and still have time to pull myself together before I picked them up. But then I remembered I had to go to the bank and the pharmacy, which still left me about an hour for my waterworks. And then the school called, and Fighter had a fever, so I picked both of the twins up and brought them home and made snacks and got Superhero off the bus, and it passed.
I wanted to cry for so many reasons. The utter exhaustion from being everyone’s everything. The fear and confusion of not knowing what my boys need, but being completely certain I’m not giving it to them. The unfairness of my non-smoking, non-drinking mother battling cancer, the frustration of not being able to find the house that could be our home, the worry, concern, and anger as I watch my husband struggle, more than a year later, with an injury caused by the negligence of a system that doesn’t even care enough to apologize. And so much more.
But I didn’t cry. I pulled myself together and I picked up my boys and we went on with our lives.
Tonight, though, there was no going forward. Because today, we got the preliminary results from the evaluations we’ve been waiting on for months. My creative, intelligent Superhero has Attention Deficit Hyperactivity Disorder, as well as (most likely) Asperger’s Syndrome. My little Fighter is Autistic. And my beautiful, loving Artist needs to have an MRI and CT scan to confirm a brain abnormality.
These are the same three little boys I had yesterday, last week, last month, last year. And yet the task of raising them suddenly seems so daunting, so impossible, that I don’t even know how to breathe.
How can I do this? They need so much, and they need it from me, and I just don’t know if I have it to give. And that’s not even touching on the overwhelming guilt—what on earth did I do to my children? Three children with such amazing challenges: how could that NOT, at least in some ways, be MY fault?
And so I put my children to bed, made sure they were asleep, and then I cried. I cried not in mourning for the children I don’t have, but in agony for the amazing children I DO have, and the mother they need that I’m not sure I can be. I cried in fear for a marriage already shaken by the stress of the last few years—can it possibly stand more? I cried for my mother, who I am sure is frightened and angry and frustrated in her own right, and whose only daughter is so caught up in her own world that she has little to offer. I cried because I don’t know what the future holds, but I suspect I simply am not up to confronting it.
And I cried because sometimes, there is just nothing else you can do.
Tonight, I cried.
Tomorrow, I will pull myself together and gather my boys into my arms, and we will go on with our lives.
Because sometimes, there is just nothing else you can do.
It caught me utterly and completely by surprise, and yet there was no surprise at all. Actually, I wanted to cry so badly last week that I scheduled a time for it. I promised myself that if I could just get through the morning, and get the twins to therapy, and then get them to preschool, I could cry for a solid 90 minutes, and still have time to pull myself together before I picked them up. But then I remembered I had to go to the bank and the pharmacy, which still left me about an hour for my waterworks. And then the school called, and Fighter had a fever, so I picked both of the twins up and brought them home and made snacks and got Superhero off the bus, and it passed.
I wanted to cry for so many reasons. The utter exhaustion from being everyone’s everything. The fear and confusion of not knowing what my boys need, but being completely certain I’m not giving it to them. The unfairness of my non-smoking, non-drinking mother battling cancer, the frustration of not being able to find the house that could be our home, the worry, concern, and anger as I watch my husband struggle, more than a year later, with an injury caused by the negligence of a system that doesn’t even care enough to apologize. And so much more.
But I didn’t cry. I pulled myself together and I picked up my boys and we went on with our lives.
Tonight, though, there was no going forward. Because today, we got the preliminary results from the evaluations we’ve been waiting on for months. My creative, intelligent Superhero has Attention Deficit Hyperactivity Disorder, as well as (most likely) Asperger’s Syndrome. My little Fighter is Autistic. And my beautiful, loving Artist needs to have an MRI and CT scan to confirm a brain abnormality.
These are the same three little boys I had yesterday, last week, last month, last year. And yet the task of raising them suddenly seems so daunting, so impossible, that I don’t even know how to breathe.
How can I do this? They need so much, and they need it from me, and I just don’t know if I have it to give. And that’s not even touching on the overwhelming guilt—what on earth did I do to my children? Three children with such amazing challenges: how could that NOT, at least in some ways, be MY fault?
And so I put my children to bed, made sure they were asleep, and then I cried. I cried not in mourning for the children I don’t have, but in agony for the amazing children I DO have, and the mother they need that I’m not sure I can be. I cried in fear for a marriage already shaken by the stress of the last few years—can it possibly stand more? I cried for my mother, who I am sure is frightened and angry and frustrated in her own right, and whose only daughter is so caught up in her own world that she has little to offer. I cried because I don’t know what the future holds, but I suspect I simply am not up to confronting it.
And I cried because sometimes, there is just nothing else you can do.
Tonight, I cried.
Tomorrow, I will pull myself together and gather my boys into my arms, and we will go on with our lives.
Because sometimes, there is just nothing else you can do.
Super Powers
While driving to the pediatrician today (to find out that Fighter most likely does NOT have an ear infection, YEAH!), Fighter suddenly started clapping his hands excitedly and then began signing and saying 'Flower! Flower!'
We were passing a graveyard.
One of Fighter's superpowers is the ability to look at things in a completely different way than the norm. I love him for it, and I'm so glad he shares his views with me!
We were passing a graveyard.
One of Fighter's superpowers is the ability to look at things in a completely different way than the norm. I love him for it, and I'm so glad he shares his views with me!
Mother's Day
One of the joys of public school that I had given little thought to until this year is the receipt of multiple handmade gifts for holidays. Christmas resulted in an absolute treasure trove of painted, glued, and glittered projects, all but the latter earning a hallowed spot in my Christmas decorations for future years (sorry, but I have an aversion to glitter, especially when it's falling off all over everything). There were a handful of items for Valentine's day, and today, Superhero came home with my Mother's day gifts.
I got a flower planted in a Dixie cup (I didn't have the heart to tell Superhero that even if it were some sort of uber plant that would grow in the dessert, it still wouldn't survive my brown thumb for more than a few weeks). I also received a silhouette--a project I've been wanting to do for a while now, and the laminated one is just impetus to make the pretty ones I bought the supplies for before Christmas. My beautiful, hand colored and written Mother's day card, says:
Dear Mom,
I love u mommy bekuls u love me oh i theink u r such a grat cook
Love *Superhero*
There are some things a six year old just can't put into words, so I decided to interpret this as 'I love you for all you are and all you do.' I honestly have no idea where the great cook came from, since he rarely eats anything I actually cook, so I can only presume that he was both hungry and dreaming about my canned ravioli skilz.
Then came both the sweetest and funniest gift of all. A xeroxed Mad Libs type page, where Superhero filled in the blanks. I giggled and laughed uproariously, and was surprised when Superhero looked over and said 'Mommy, are you crying?'--surprised to find that I was :P
My Special Mother
My mother is the most wonderful mom in the whole world!!
She's as pretty as a picture . She weighs about 10.20 pounds and she's 100 feet tall.
Her favorite color is purple.
Her favorite food is carrots w/ranch dressing.
In the good old days when Mom was a little girl, she used to play with dolls.
Her mother always made her watch tv.
I think Mom looks funny when she gets out of the bed.
My favorite outfit on her is a purple wedding dress.
I know she's angry when she grounds me.
I wish Mom would play video games and go to the playground with me everyday.
Love, *Superhero*
For the record, I do not own and have never owned a purple wedding dress--our best guess is he's referring to a burgundy nightgown I have. I can't stand ranch dressing. And I weigh a BIT more than 10.20 pounds, though I can see how 5'7" might be mistaken for 100 feet tall when you're six.
I got a flower planted in a Dixie cup (I didn't have the heart to tell Superhero that even if it were some sort of uber plant that would grow in the dessert, it still wouldn't survive my brown thumb for more than a few weeks). I also received a silhouette--a project I've been wanting to do for a while now, and the laminated one is just impetus to make the pretty ones I bought the supplies for before Christmas. My beautiful, hand colored and written Mother's day card, says:
Dear Mom,
I love u mommy bekuls u love me oh i theink u r such a grat cook
Love *Superhero*
There are some things a six year old just can't put into words, so I decided to interpret this as 'I love you for all you are and all you do.' I honestly have no idea where the great cook came from, since he rarely eats anything I actually cook, so I can only presume that he was both hungry and dreaming about my canned ravioli skilz.
Then came both the sweetest and funniest gift of all. A xeroxed Mad Libs type page, where Superhero filled in the blanks. I giggled and laughed uproariously, and was surprised when Superhero looked over and said 'Mommy, are you crying?'--surprised to find that I was :P
My Special Mother
My mother is the most wonderful mom in the whole world!!
She's as pretty as a picture . She weighs about 10.20 pounds and she's 100 feet tall.
Her favorite color is purple.
Her favorite food is carrots w/ranch dressing.
In the good old days when Mom was a little girl, she used to play with dolls.
Her mother always made her watch tv.
I think Mom looks funny when she gets out of the bed.
My favorite outfit on her is a purple wedding dress.
I know she's angry when she grounds me.
I wish Mom would play video games and go to the playground with me everyday.
Love, *Superhero*
For the record, I do not own and have never owned a purple wedding dress--our best guess is he's referring to a burgundy nightgown I have. I can't stand ranch dressing. And I weigh a BIT more than 10.20 pounds, though I can see how 5'7" might be mistaken for 100 feet tall when you're six.
Bibbity Bobbity Boo
Superhero is spending the weekend with my parents, so we took the twins out with us yesterday and today. Yesterday, we were house hunting, and today we were house hunting and going to yard sales (one of our favorite pass times!).
We took the boys to a sale at a church for lunch--in our area, almost every church sale has two things in common: extremely low prices and hot dogs :D So we had hot dogs for lunch. Fighter sat at the table, without complaint, and ate his lunch. He sat in a regular chair. He did not scream or throw food, make a mess, or even get up and run around. In fact, Artist got bored with lunch and ran off, with John going after him, while Fighter continued to eat. He chatted easily with the people nearby, asked me repeatedly for each item ("cookie pease" "chip pease" "water pease"), and said thank you after nearly every bite. It was such an enjoyable time that I didn't realize until we were leaving the significance of it--this is the first time that Fighter has eaten a 'typical' family meal with us, without being strapped into a high chair, without throwing food, without screaming or yelling or being otherwise inappropriate. The first time EVER.
I feel bad for Fighter that life seems so much more difficult for him than it is for the average child. But I am so grateful that his exceptionality allows me to appreciate the joys of a quiet lunch in a church basement--an experience I would have given little to no value to until today, when it's significance suddenly rivaled the Royal Wedding. Fighter's special brand of magic can elevate the mundane to the extraordinary, and I am a lucky, lucky woman to be able to share that magic.
We took the boys to a sale at a church for lunch--in our area, almost every church sale has two things in common: extremely low prices and hot dogs :D So we had hot dogs for lunch. Fighter sat at the table, without complaint, and ate his lunch. He sat in a regular chair. He did not scream or throw food, make a mess, or even get up and run around. In fact, Artist got bored with lunch and ran off, with John going after him, while Fighter continued to eat. He chatted easily with the people nearby, asked me repeatedly for each item ("cookie pease" "chip pease" "water pease"), and said thank you after nearly every bite. It was such an enjoyable time that I didn't realize until we were leaving the significance of it--this is the first time that Fighter has eaten a 'typical' family meal with us, without being strapped into a high chair, without throwing food, without screaming or yelling or being otherwise inappropriate. The first time EVER.
I feel bad for Fighter that life seems so much more difficult for him than it is for the average child. But I am so grateful that his exceptionality allows me to appreciate the joys of a quiet lunch in a church basement--an experience I would have given little to no value to until today, when it's significance suddenly rivaled the Royal Wedding. Fighter's special brand of magic can elevate the mundane to the extraordinary, and I am a lucky, lucky woman to be able to share that magic.
The Best Advice . . .
Artist threw a toy in the air and it hit him on the head.
Artist: OW!
Fighter: Ok?
Artist: Yeah.
Fighter: Do?
Artist: throw toy, hit head.
Fighter: No throw. No Ow.
Artist: Oh, thank you bubby.
The funniest part is that Artist's gratitude was sincere--he seemed sincerely, amazingly grateful that Fighter gave him the life-changing advice of not throwing toys into the air and letting them land on his head. And you know what? Maybe it IS life changing. Perhaps we'd all be better off if we had learned early on to recognize that what we are about to do is an incredibly BAD idea.
Artist: OW!
Fighter: Ok?
Artist: Yeah.
Fighter: Do?
Artist: throw toy, hit head.
Fighter: No throw. No Ow.
Artist: Oh, thank you bubby.
The funniest part is that Artist's gratitude was sincere--he seemed sincerely, amazingly grateful that Fighter gave him the life-changing advice of not throwing toys into the air and letting them land on his head. And you know what? Maybe it IS life changing. Perhaps we'd all be better off if we had learned early on to recognize that what we are about to do is an incredibly BAD idea.
We love you, Nana
Fighter is a very insistent child. I've seen him repeat 'HELLO' firmly to a stranger a half dozen times before they responded to him, adamant that they were NOT going to move on with their lives without acknowledging his existence.
So his new game--taught to him by his Nana at Superhero's tee ball game a few weeks ago--always starts the same way: Fighter will sign and say "I" repeatedly until the victi-err, participant of his choice repeats "I" back to him. Next is the signing and statement of "Love", also repeated by the participant, followed by "YOU!"--and then munching (picture an adult pretending to munch a child's neck. Fighter usually substitutes his own arm. And frequently, there is real munching.) This has become his favorite game, played in repetitions lasting as long as fifteen minutes, multiple times a day with anyone he can corner. And of course, we're very happy to participate. A three word sentence with clear understanding is HUGE progress for Fighter, so it's a real pleasure for the adults in his life to play along with him.
Today, while playing the I love you game, John smiled and said "Say 'Thank you Nana.'". Now, every parent finds themselves asking their kids to parrot them, with phrases like "Say I'll see you soon, Grandpa" or "What do we say when our friend gives us a birthday gift?" rolling off our tongues almost without thought. But with Fighter, it really is habit that makes us make our requests, as he has never repeated anything we've asked him to. So imagine our shock when he looked at his daddy, beaming with excitement, and said "Thank you Nana!" He has been working SO HARD lately, and the progress he's making is astounding. And while I know that our work (our including me, John, his school staff, and his therapists) is contributing to it, for these two particular breakthroughs, we have Nana to thank.
Raising an exceptional child is exhausting in the best of circumstances. Raising THREE exceptional children is overwhelming. Raising three exceptional children while dealing with work related injuries, sick family members, community activities, and a full-time university course load is--to be honest, I'm not sure there is a word for it. Having an extended family that not only helps out, but actively works to discover the best ways to help our boys is a blessing so large that there isn't a word for that, either. We are blessed to have our boys, and our blessings are multiplied by parents willing to go the extra mile for their grandchildren.
So his new game--taught to him by his Nana at Superhero's tee ball game a few weeks ago--always starts the same way: Fighter will sign and say "I" repeatedly until the victi-err, participant of his choice repeats "I" back to him. Next is the signing and statement of "Love", also repeated by the participant, followed by "YOU!"--and then munching (picture an adult pretending to munch a child's neck. Fighter usually substitutes his own arm. And frequently, there is real munching.) This has become his favorite game, played in repetitions lasting as long as fifteen minutes, multiple times a day with anyone he can corner. And of course, we're very happy to participate. A three word sentence with clear understanding is HUGE progress for Fighter, so it's a real pleasure for the adults in his life to play along with him.
Today, while playing the I love you game, John smiled and said "Say 'Thank you Nana.'". Now, every parent finds themselves asking their kids to parrot them, with phrases like "Say I'll see you soon, Grandpa" or "What do we say when our friend gives us a birthday gift?" rolling off our tongues almost without thought. But with Fighter, it really is habit that makes us make our requests, as he has never repeated anything we've asked him to. So imagine our shock when he looked at his daddy, beaming with excitement, and said "Thank you Nana!" He has been working SO HARD lately, and the progress he's making is astounding. And while I know that our work (our including me, John, his school staff, and his therapists) is contributing to it, for these two particular breakthroughs, we have Nana to thank.
Raising an exceptional child is exhausting in the best of circumstances. Raising THREE exceptional children is overwhelming. Raising three exceptional children while dealing with work related injuries, sick family members, community activities, and a full-time university course load is--to be honest, I'm not sure there is a word for it. Having an extended family that not only helps out, but actively works to discover the best ways to help our boys is a blessing so large that there isn't a word for that, either. We are blessed to have our boys, and our blessings are multiplied by parents willing to go the extra mile for their grandchildren.
I'm a cat person
We love our Gilley, but she's about 14 years old--not exactly a 'kids' pet. Superhero has wanted a puppy for a while, but we just don't have the time or energy to devote to another living creature. So, I bought a FurReal puppy at the thrift store yesterday. Now, I know it's not a real dog, but it is cute, and the boys love it. Or at least, Superhero and Fighter love it. Fighter asked where his 'DOG' was just before he closed his eyes to go to sleep, and it was the first thing he asked for this morning. Artist, on the other hand . . .
Me: So, what should we name your puppy? (talking to both Artist & Fighter)
Artist: No name puppy.
Me: The puppy needs a name.
Artist: ME no name puppy. Bubby (Fighter) do it. Bubby puppy.
Me: It's not just Bubby's puppy. It's for all of you to share.
Artist: NO. Bubby puppy. *Artist* want kitty cat.
Me: You want a cat?
Artist: Yes, *Artist want kitty cat. *Artist* pet kitty cat, and hug, and squeeze, and kiss. *Artist* LOVE kitty cat. *Artist* no love puppy--Bubby love puppy.
So I guess I'm looking for a FurReal cat now :P
Me: So, what should we name your puppy? (talking to both Artist & Fighter)
Artist: No name puppy.
Me: The puppy needs a name.
Artist: ME no name puppy. Bubby (Fighter) do it. Bubby puppy.
Me: It's not just Bubby's puppy. It's for all of you to share.
Artist: NO. Bubby puppy. *Artist* want kitty cat.
Me: You want a cat?
Artist: Yes, *Artist want kitty cat. *Artist* pet kitty cat, and hug, and squeeze, and kiss. *Artist* LOVE kitty cat. *Artist* no love puppy--Bubby love puppy.
So I guess I'm looking for a FurReal cat now :P
Someone grows.
We had an IEP meeting today. For the uninitiated, that's an Individualized Education Plan here in WV--the plan for dealing with an exceptional child's exceptionalities. I had one forever ago. The state of West Virginia considered me 'gifted' long before the ultimate gift of my sons was given to me. But it turns out that an IEP for a child whose most difficult request was to be allowed to take classes formerly reserved for upperclassmen is MUCH different than an IEP for children who are developmentally delayed.
I was really, really worried about this meeting, to the point that I put it off for at least a month longer than I should have. John even asked his dad (a combination education expert and worried grandfather) to come down and go with me. We requested this meeting, mostly because I wanted to integrate some things from their occupational, physical, and speech therapists into their curriculum, but also because we had some concerns about the class itself. The meeting needed to be held, things needed to be said, and yet I dreaded it. What if they didn't listen to me? What if I didn't do a good job advocating for my children? What if, rather than improve the situation, I angered the people who spend unsupervised time with my nonverbal little boys? How could I strike the right balance of advocating for them while still keeping them safe?
Turns out, I worried needlessly. While I may not have been born to parent special needs children, I most certainly have a talent for advocating for those who can not advocate for themselves. I was nervous and afraid--and more than once looked to my father in law for strength and support--but I did not, as I had feared, fold, or even back down. I was honest and bold, polite but argumentative. I asked why they had not yet had the evaluations we requested months ago, how the classroom aides were trained, why my children were being taken into 'typical' classrooms, and on and on. I asked why the classes I had observed did not have as much support from the 'support staff' as I would like, and I asked how they were going to restructure the class to meet my sons' needs. In other words, I was an advocate for my sons, and though I wish I had done a little more, I would give myself a strong B for today's meeting.
Which isn't to say that the meeting was all about me being a buzzing fly and forcing them to either swat me or let me out :P. I learned a lot. For example, I learned that the school system considers the therapy my children are getting a 'medical' intervention, and therefore do not believe it automatically follows that they need those interventions in an educational setting. I learned that there are support systems already in place--but that finding them can be an adventure all it's own. I learned that a parent requesting an official meeting scares the bejesus out of people--which leads me to suspect that I have more power than they would like me to believe.
Most importantly though, I was reminded that like it or not, I am my sons' advocate. It's my job to make sure they have what they need, and if I can't give them what they need, then it's my job to find someone who can. If I don't know what they need, it's my job to find someone who can figure it out. It is my JOB to take care of them--and my JOY to watch them grow. And somehow, along the way, I grow, too.
I was really, really worried about this meeting, to the point that I put it off for at least a month longer than I should have. John even asked his dad (a combination education expert and worried grandfather) to come down and go with me. We requested this meeting, mostly because I wanted to integrate some things from their occupational, physical, and speech therapists into their curriculum, but also because we had some concerns about the class itself. The meeting needed to be held, things needed to be said, and yet I dreaded it. What if they didn't listen to me? What if I didn't do a good job advocating for my children? What if, rather than improve the situation, I angered the people who spend unsupervised time with my nonverbal little boys? How could I strike the right balance of advocating for them while still keeping them safe?
Turns out, I worried needlessly. While I may not have been born to parent special needs children, I most certainly have a talent for advocating for those who can not advocate for themselves. I was nervous and afraid--and more than once looked to my father in law for strength and support--but I did not, as I had feared, fold, or even back down. I was honest and bold, polite but argumentative. I asked why they had not yet had the evaluations we requested months ago, how the classroom aides were trained, why my children were being taken into 'typical' classrooms, and on and on. I asked why the classes I had observed did not have as much support from the 'support staff' as I would like, and I asked how they were going to restructure the class to meet my sons' needs. In other words, I was an advocate for my sons, and though I wish I had done a little more, I would give myself a strong B for today's meeting.
Which isn't to say that the meeting was all about me being a buzzing fly and forcing them to either swat me or let me out :P. I learned a lot. For example, I learned that the school system considers the therapy my children are getting a 'medical' intervention, and therefore do not believe it automatically follows that they need those interventions in an educational setting. I learned that there are support systems already in place--but that finding them can be an adventure all it's own. I learned that a parent requesting an official meeting scares the bejesus out of people--which leads me to suspect that I have more power than they would like me to believe.
Most importantly though, I was reminded that like it or not, I am my sons' advocate. It's my job to make sure they have what they need, and if I can't give them what they need, then it's my job to find someone who can. If I don't know what they need, it's my job to find someone who can figure it out. It is my JOB to take care of them--and my JOY to watch them grow. And somehow, along the way, I grow, too.
The force is strong in this one . . .
Superhero: (entering room with two light sabers) I am a dark Jedi. I have come to attack you. I am DARTH MAKULA!
John: Darth Dracula? oooh, that's--
Superhero: NO, Darth MAKULA! I have come to attack you.
John: Makula? What's that?
Superhero: It's my NAME. I LIKE it. It's very strong. And now I'm going to attack you, Jedi!
John: Darth Dracula? oooh, that's--
Superhero: NO, Darth MAKULA! I have come to attack you.
John: Makula? What's that?
Superhero: It's my NAME. I LIKE it. It's very strong. And now I'm going to attack you, Jedi!
Undead bunnies?
Superhero: Mommy, when is Easter?
Me: Well, this is still March, but it will be April on Friday, and Easter is near the end of April this year, so about a month.
Superhero: I like Easter. Easter is when the Easter bunny rises from the dead and hides Easter eggs.
*stunned silence*
Superheo: Really, my teacher told me that.
Me: Superhero, are you sure you didn't misunder--
Superhero: NO, Mommy, I'm sure, I was LISTENING!! She said the Easter bunny rises from the dead and hides all the Easter eggs for all the boys and girls to find!
Hubby: I don't care if that's what she said or not. That is AWESOME.
Me: Well, this is still March, but it will be April on Friday, and Easter is near the end of April this year, so about a month.
Superhero: I like Easter. Easter is when the Easter bunny rises from the dead and hides Easter eggs.
*stunned silence*
Superheo: Really, my teacher told me that.
Me: Superhero, are you sure you didn't misunder--
Superhero: NO, Mommy, I'm sure, I was LISTENING!! She said the Easter bunny rises from the dead and hides all the Easter eggs for all the boys and girls to find!
Hubby: I don't care if that's what she said or not. That is AWESOME.
Oh, if only the world were perfect . . .
Artist & Superhero stayed with mom yesterday while John & I took Fighter with us house hunting. We discovered very quickly that Fighter LOVES being an 'only child'. Our boys don't get to have both parents to themselves very often--we endeavor to make sure they all get one on one time on a regular basis, but it's pretty difficult to arrange time with both of us. We've also discovered that the boys enjoy it different amounts--Superhero likes it, but also likes time to himself, Artist enjoys it for just a few minutes then starts asking where his brothers are. Fighter, though, just blossomed with both of us at his beck and call. He's been working so hard lately, and making amazing progress. We're going to have to figure out a way to give him more of the 'only child' time he enjoys so much.
Hungy boy
A few days ago, Fighter looked at me, rubbed his belly, and said 'Hungy, mama, hungy!" This is the first time in his 3.5 years that Fighter has TOLD us he needed something. Some times, it's the little things. But more often, those little things are HUGE--you just need to look at them from the right angle.
Vegetarians take care of animals . . .
Superhero: So that's what sushi is! It's raw fish!
Me: Not all sushi is raw, and not all of it is fish. Aunt Tabitha likes some sushi, and she's a vegetarian.
Superhero: Aunt Tabitha is a vegetarian?
Me: Yes, and so is Zara.
Superhero: Zara is a vegetarian? She is an animal doctor?
Me: That's a veterinarian. A Vegetarian doesn't eat meat.
Superhero: Oh, THAT kind of vegetarian! I wondered what an animal doctor had to do with sushi . . .
Me: Not all sushi is raw, and not all of it is fish. Aunt Tabitha likes some sushi, and she's a vegetarian.
Superhero: Aunt Tabitha is a vegetarian?
Me: Yes, and so is Zara.
Superhero: Zara is a vegetarian? She is an animal doctor?
Me: That's a veterinarian. A Vegetarian doesn't eat meat.
Superhero: Oh, THAT kind of vegetarian! I wondered what an animal doctor had to do with sushi . . .
2010—A Year in Review
This update has been a long time coming. Sorry about that :D I remember when I was at Concord, some dear friends who had young children were lamenting that they never remembered to take pictures or videos of their children, and then said “We’re too busy living our life to worry about documenting it.” I didn’t really understand at the time, but I do now :D
2010 was an interesting year. As always, we had lots of illness and insanity at the beginning of the year, but things started to settle down a bit as spring arrived. By about April, I had begun to talk to our pediatrician about the twins’ now clearly evident speech delay, and he had raised concerns about Fighter’s focus and decreased sensitivity to pain. Less than six months from their third birthday, though, was really too late for Birth to Three services, so we began looking into other options. Superhero started playing tee ball, and LOVED it. Artist cried every game because we wouldn’t let him play, too: D John continued to work on his Masters in Counseling. And I went back to school at Marshall—I am enrolled full time in their Business Management program.
Then in May, John was hurt at work. He was breaking up a fight and ended up being attacked by one of the students, resulting in damage to his spinal column. He finished out the school year, but it was clearly evident that he was not up to par. He wasn’t even able to practice tee ball with Superhero in the backyard. As summer came and went, his condition didn’t improve, and his mood clearly worsened. We had planned a trip to Canada the year before, so we went, but it was probably the most stressful trip of my entire life. Worst of all, John had been looking forward to taking our boys to Canada literally since before they were born, and he was in so much pain while we were there that there was no real connection. While the boys and I both enjoyed our first trip to Canada and Niagara Falls (and I have to admit I’m more than a little pleased that they visited another country before they started kindergarten!), it was still nowhere near the trip it would have been before John was injured.
When we returned, John and I had a long talk about the trip and his injuries, and finally decided to get an attorney to handle the logistics of what were now clearly going to be battles with worker’s comp. It was a great decision, but we’ve still got a battle ahead of us.
As fall arrived, John became almost despondent when it became clear he wouldn’t be able to return to work on time. It was horribly tough on him—John has worked steadily since he was a teenager, and teaching isn’t just what he does, it’s who he IS. But we muddled through, and it was nice to have him around for some of the tough decisions that were coming. Superhero started kindergarten and community soccer, and suddenly I was a soccer mom: D John handled most of tee ball season, since a large portion of it was before he was hurt, but soccer was almost entirely me. I think Superhero enjoyed the time with mom, but of course it was still hard when daddy couldn’t be there or couldn’t help out. Around the same time, we took the twins for a speech screening, and were more than a little shocked when after just a few minutes we were told that they needed a LOT more than just some speech therapy. Soon, we were caught in a whirlwind of testing and opinions (with a bout of croup thrown in in the middle—THAT’S an experience I could go the rest of my life without repeating!), and suddenly, decisions had to be made. We decided on Cincinnati Children’s hospital for a complete developmental workup—while they have one of the better developmental teams on the East Coast, they also have a LONG waiting list, so that appointment will happen this summer. In the meantime, the twins are in a special needs preschool class (two years before we had planned to send them to school). We have also begun occupational and speech therapies at a pediatric therapy center, and Fighter will be having physical therapy for a few months at the same center. And in a few weeks, they’ll have an evaluation at a clinic that specializes in behavioral therapy, a treatment that has a proven track record with children with sensory issues.
And the question I invariably get at this point in the story is ‘So what’s wrong with them?’ My answer? “ABSOLUTELY NOTHING IS WRONG WITH THEM—THEY’RE NOT BROKEN!” :D They are, however, developmentally delayed, especially in speech and attention span. Fighter almost certainly and Artist & Superhero quite probably have a sensory disorder—whether that means autism or something else entirely remains to be seen. What does that mean? Well, it means they process the world differently than the average child. They’re exceptional, which of course I knew before they were even conceived: D :D :D While it’s awesome that Fighter loves the feel of the sun on his face and the wind in his hair to such a degree that a sunny spring day has him standing outside with his eyes closed, his head tossed back, and a look of pure joy on his face, it is not so awesome that he sees no reason why he can’t run around a busy parking lot. And while his world is a beautiful one, without the ability to communicate there’s no room for anyone else in it. It’s incredible that Superhero can read on the level of someone three times his age and that his reasoning skills put mine to shame, but if he doesn’t learn to think before he acts, it won’t make a difference. And Artist is highly intelligent, but no one knows it because he has difficulties communicating his thoughts, and he’s a sweet kid, but he hides it very well with his frustration-fuelled tantrums. Fighter’s issues are the most extreme, but the other two need a little extra guidance, too. Our goal with therapy is not to teach them conformity or to make them ‘just like other kids’, but rather to help them figure out what they need to do to function in the world they live in. Our goal is not to limit them with labels and diagnoses, but rather to set them free with the skills and coping mechanisms they need to follow their dreams wherever they may take them—as long as they don’t take them into the path of oncoming traffic: D
We’re making substantial progress, too. We’re working with a team of educators and counselors at Superhero’s school to help him channel his excess energies in appropriate ways. Artist will be seeing a hearing specialist soon to make sure his hearing is ok before we do some intensive speech therapy. And Fighter is responding so well, both at school and at therapy, that it’s almost like he’s a different child. John is back at work—though that is honestly less because he was ready to return and more because our bank account was empty. John, also, has shown a significant amount of improvement over the past couple of months, and we’re very hopeful that a new treatment he’ll be having soon (epidural steroids—they’re going to inject steroids directly into his spinal column) will give him some much-needed pain relief.
It was pointed out to me after my last update that my ‘family updates’ rarely include an update on ME, so I’m giving myself my own paragraph : D As I mentioned, I went back to school this year, and while I’m still quite amazed that I’m studying business management, I’m truly enjoying it. I also, thanks to Tabitha Black and her quiet belief in me, learned to knit (though I haven’t touched my knitting needles in months now ). And I took the Wilton Basics cake decorating class (again with Tabitha)—I wasn’t exactly a stellar student, but it did get me out of the house for a few hours a week for a month or so :D I don’t sleep enough, and when I get sick, I’m sick for days because I’ve spent so much time burning the candle at both ends that I have nothing left. I am a wife, mother, student, friend, daughter, blogger, therapist, chauffeur, personal secretary to four people, advocate, keeper of the family calendar, the family accountant, and on and on, and I’m still trying to figure out how to balance all of that AND get the sleep I need :P. I am learning who I am, and who I am not. I have discovered that I’m not the person I thought I was, but I’m a lot like the person I always WISHED I was. How’s that for awesome? When I was pregnant with Superhero, my biggest fear was that he would be damaged in some way, and that I would be unable to cope with a child who did not meet my expectations. I remember whispering to John late at night, in the dark (as if such thoughts couldn’t even be allowed to exist in a normal voice or by the light of day) “What if there’s something wrong with it? What if I can’t love it?” Funnily enough, it turns out that ‘it’ was the wrong descriptor—the words I should have used were ‘him’ and more importantly ‘mine’. It also turns out that ‘wrong’ doesn’t mean ‘broken’. Sometimes, all it means is ‘unique’ And it also somehow turns out that somewhere between the parasite who cracks your ribs and the screaming banshee who poops on your brand-new pants, the love appears. I was worried that I wouldn’t have the fortitude to love my child if s/he wasn’t perfect. Turns out, I was wrong on both counts—first, my boys ARE perfect, even with some of the issues I was so afraid of, and second, I’d love them fiercely even if they weren’t. They’re so easy to love that it doesn’t take any effort at all—I’d actually have to work at NOT loving them! What DOES take effort is caring for them and giving them what they need, and I constantly feel like they need more than I give. Luckily, in the midst of one of my worst I’m-such-not-the-mom-he-needs panic attacks, in stepped Tabitha with the advice that has become my mantra:
“You may not be the mom he needs, but you’re the mom he’s got, so suck it up.”
And she was right, as usual :D I’m impatient and demanding, I don’t always consider the effect of what I’m going to say before I say it. I can be flighty, I always take on too much, and I often get overwhelmed. But no one, ever, anywhere will love these boys more than I do. No matter what else I am, I am their MOTHER, and I always will be. So I’ve (almost) stopped wasting time beating myself up about not being the mom they need, and instead put my energies towards BECOMING the mom they need. Most importantly, though, I’ve found that happiness is no longer a goal for the future—it’s here. In the middle of the laundry and the tantrums, the worry and the stress, the bills and the never-ending housework, I’ve found my happiness. Even on bad days, my heart is filled with such joy, such peace, that it is absolutely indescribable.
And so, here we are. 2010 was an amazing year, both in good ways and in not so good ways. But overall we are living, growing, thriving. The road isn’t always smooth, and I’m not sure exactly what the destination is, but we, as a family, are enjoying our journey together. Someday in the not too distant future, I will quietly stand back as my babies take the first tottering steps onto their own roads, without a destination in sight. It is my hope and fervent prayer that I will have taught them by example that it is the journey that matters, and to enjoy each and every step-even the stumbles-along the way. In the meantime, I will enjoy having their hands in mine, tottering along on my own path, exuberant in the knowledge that whatever else we all are, we are a family, we share a joyous love, and we are incredibly, amazingly blessed to have each other.
2010 was an interesting year. As always, we had lots of illness and insanity at the beginning of the year, but things started to settle down a bit as spring arrived. By about April, I had begun to talk to our pediatrician about the twins’ now clearly evident speech delay, and he had raised concerns about Fighter’s focus and decreased sensitivity to pain. Less than six months from their third birthday, though, was really too late for Birth to Three services, so we began looking into other options. Superhero started playing tee ball, and LOVED it. Artist cried every game because we wouldn’t let him play, too: D John continued to work on his Masters in Counseling. And I went back to school at Marshall—I am enrolled full time in their Business Management program.
Then in May, John was hurt at work. He was breaking up a fight and ended up being attacked by one of the students, resulting in damage to his spinal column. He finished out the school year, but it was clearly evident that he was not up to par. He wasn’t even able to practice tee ball with Superhero in the backyard. As summer came and went, his condition didn’t improve, and his mood clearly worsened. We had planned a trip to Canada the year before, so we went, but it was probably the most stressful trip of my entire life. Worst of all, John had been looking forward to taking our boys to Canada literally since before they were born, and he was in so much pain while we were there that there was no real connection. While the boys and I both enjoyed our first trip to Canada and Niagara Falls (and I have to admit I’m more than a little pleased that they visited another country before they started kindergarten!), it was still nowhere near the trip it would have been before John was injured.
When we returned, John and I had a long talk about the trip and his injuries, and finally decided to get an attorney to handle the logistics of what were now clearly going to be battles with worker’s comp. It was a great decision, but we’ve still got a battle ahead of us.
As fall arrived, John became almost despondent when it became clear he wouldn’t be able to return to work on time. It was horribly tough on him—John has worked steadily since he was a teenager, and teaching isn’t just what he does, it’s who he IS. But we muddled through, and it was nice to have him around for some of the tough decisions that were coming. Superhero started kindergarten and community soccer, and suddenly I was a soccer mom: D John handled most of tee ball season, since a large portion of it was before he was hurt, but soccer was almost entirely me. I think Superhero enjoyed the time with mom, but of course it was still hard when daddy couldn’t be there or couldn’t help out. Around the same time, we took the twins for a speech screening, and were more than a little shocked when after just a few minutes we were told that they needed a LOT more than just some speech therapy. Soon, we were caught in a whirlwind of testing and opinions (with a bout of croup thrown in in the middle—THAT’S an experience I could go the rest of my life without repeating!), and suddenly, decisions had to be made. We decided on Cincinnati Children’s hospital for a complete developmental workup—while they have one of the better developmental teams on the East Coast, they also have a LONG waiting list, so that appointment will happen this summer. In the meantime, the twins are in a special needs preschool class (two years before we had planned to send them to school). We have also begun occupational and speech therapies at a pediatric therapy center, and Fighter will be having physical therapy for a few months at the same center. And in a few weeks, they’ll have an evaluation at a clinic that specializes in behavioral therapy, a treatment that has a proven track record with children with sensory issues.
And the question I invariably get at this point in the story is ‘So what’s wrong with them?’ My answer? “ABSOLUTELY NOTHING IS WRONG WITH THEM—THEY’RE NOT BROKEN!” :D They are, however, developmentally delayed, especially in speech and attention span. Fighter almost certainly and Artist & Superhero quite probably have a sensory disorder—whether that means autism or something else entirely remains to be seen. What does that mean? Well, it means they process the world differently than the average child. They’re exceptional, which of course I knew before they were even conceived: D :D :D While it’s awesome that Fighter loves the feel of the sun on his face and the wind in his hair to such a degree that a sunny spring day has him standing outside with his eyes closed, his head tossed back, and a look of pure joy on his face, it is not so awesome that he sees no reason why he can’t run around a busy parking lot. And while his world is a beautiful one, without the ability to communicate there’s no room for anyone else in it. It’s incredible that Superhero can read on the level of someone three times his age and that his reasoning skills put mine to shame, but if he doesn’t learn to think before he acts, it won’t make a difference. And Artist is highly intelligent, but no one knows it because he has difficulties communicating his thoughts, and he’s a sweet kid, but he hides it very well with his frustration-fuelled tantrums. Fighter’s issues are the most extreme, but the other two need a little extra guidance, too. Our goal with therapy is not to teach them conformity or to make them ‘just like other kids’, but rather to help them figure out what they need to do to function in the world they live in. Our goal is not to limit them with labels and diagnoses, but rather to set them free with the skills and coping mechanisms they need to follow their dreams wherever they may take them—as long as they don’t take them into the path of oncoming traffic: D
We’re making substantial progress, too. We’re working with a team of educators and counselors at Superhero’s school to help him channel his excess energies in appropriate ways. Artist will be seeing a hearing specialist soon to make sure his hearing is ok before we do some intensive speech therapy. And Fighter is responding so well, both at school and at therapy, that it’s almost like he’s a different child. John is back at work—though that is honestly less because he was ready to return and more because our bank account was empty. John, also, has shown a significant amount of improvement over the past couple of months, and we’re very hopeful that a new treatment he’ll be having soon (epidural steroids—they’re going to inject steroids directly into his spinal column) will give him some much-needed pain relief.
It was pointed out to me after my last update that my ‘family updates’ rarely include an update on ME, so I’m giving myself my own paragraph : D As I mentioned, I went back to school this year, and while I’m still quite amazed that I’m studying business management, I’m truly enjoying it. I also, thanks to Tabitha Black and her quiet belief in me, learned to knit (though I haven’t touched my knitting needles in months now ). And I took the Wilton Basics cake decorating class (again with Tabitha)—I wasn’t exactly a stellar student, but it did get me out of the house for a few hours a week for a month or so :D I don’t sleep enough, and when I get sick, I’m sick for days because I’ve spent so much time burning the candle at both ends that I have nothing left. I am a wife, mother, student, friend, daughter, blogger, therapist, chauffeur, personal secretary to four people, advocate, keeper of the family calendar, the family accountant, and on and on, and I’m still trying to figure out how to balance all of that AND get the sleep I need :P. I am learning who I am, and who I am not. I have discovered that I’m not the person I thought I was, but I’m a lot like the person I always WISHED I was. How’s that for awesome? When I was pregnant with Superhero, my biggest fear was that he would be damaged in some way, and that I would be unable to cope with a child who did not meet my expectations. I remember whispering to John late at night, in the dark (as if such thoughts couldn’t even be allowed to exist in a normal voice or by the light of day) “What if there’s something wrong with it? What if I can’t love it?” Funnily enough, it turns out that ‘it’ was the wrong descriptor—the words I should have used were ‘him’ and more importantly ‘mine’. It also turns out that ‘wrong’ doesn’t mean ‘broken’. Sometimes, all it means is ‘unique’ And it also somehow turns out that somewhere between the parasite who cracks your ribs and the screaming banshee who poops on your brand-new pants, the love appears. I was worried that I wouldn’t have the fortitude to love my child if s/he wasn’t perfect. Turns out, I was wrong on both counts—first, my boys ARE perfect, even with some of the issues I was so afraid of, and second, I’d love them fiercely even if they weren’t. They’re so easy to love that it doesn’t take any effort at all—I’d actually have to work at NOT loving them! What DOES take effort is caring for them and giving them what they need, and I constantly feel like they need more than I give. Luckily, in the midst of one of my worst I’m-such-not-the-mom-he-needs panic attacks, in stepped Tabitha with the advice that has become my mantra:
“You may not be the mom he needs, but you’re the mom he’s got, so suck it up.”
And she was right, as usual :D I’m impatient and demanding, I don’t always consider the effect of what I’m going to say before I say it. I can be flighty, I always take on too much, and I often get overwhelmed. But no one, ever, anywhere will love these boys more than I do. No matter what else I am, I am their MOTHER, and I always will be. So I’ve (almost) stopped wasting time beating myself up about not being the mom they need, and instead put my energies towards BECOMING the mom they need. Most importantly, though, I’ve found that happiness is no longer a goal for the future—it’s here. In the middle of the laundry and the tantrums, the worry and the stress, the bills and the never-ending housework, I’ve found my happiness. Even on bad days, my heart is filled with such joy, such peace, that it is absolutely indescribable.
And so, here we are. 2010 was an amazing year, both in good ways and in not so good ways. But overall we are living, growing, thriving. The road isn’t always smooth, and I’m not sure exactly what the destination is, but we, as a family, are enjoying our journey together. Someday in the not too distant future, I will quietly stand back as my babies take the first tottering steps onto their own roads, without a destination in sight. It is my hope and fervent prayer that I will have taught them by example that it is the journey that matters, and to enjoy each and every step-even the stumbles-along the way. In the meantime, I will enjoy having their hands in mine, tottering along on my own path, exuberant in the knowledge that whatever else we all are, we are a family, we share a joyous love, and we are incredibly, amazingly blessed to have each other.
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