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.
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!
Subscribe to:
Posts (Atom)