My heart is breaking. My soul is heavy. I'm not even sure how to express in words the sadness I feel.
I took Bambam in for evaluations today. And all I can say is it was an epic fail. I know people throw that phrase around all to often these days. Its lost some of its meaning. But this was, in every sense an epic failure.
The evaluation was to start with an IQ test, move on the some social response testing, and finish up with some testing for ADHD. He lasted 15 minutes. During which he answered about 3 questions before his anxiety rose to the point that all he would say is "go home now, go home now". He didn't even respond to the question "can you show me your mouth". And I mean no response. Wouldn't look at the psychologist, didn't point, didn't have any expression, just repeated over and over "go home now, go home now." The doctor wisely stopped the testing at that point.
I am desperate. Desperate for some answers. (which I may never get) Desperate for some guidance and a path to follow. Desperate for anything. If no one can administer a meaningful test to this child, how can we determine where he is, what he needs, how best to help him. He knows where his mouth is. But he is unable to function in a testing setting with a stranger he doesn't know. And it breaks my heart to see him with so much anxiety, unable to do the simplest of tasks.
We realize that there is a very good chance we are dealing with some intellectual disability along with the autism. (one of the reason for today's testing) But my 6 year old knows where his mouth is. How do we determine how much of his response (or lack there of) is the result of intellectual disability and how much is the result of autism or anxiety or dyspraxia or sensory processing disorder or any of the many other labels that have been attached to him? Its overwhelming. And heartbreaking.
The next best thing is to have us, his parents, fill out several questionnaires about his behavior and abilities. I hate these. We've done them before on many occasions. And it never gets any easier. Being faced in black and white with the struggles my child faces on a daily basis is hard. Hard really isn't the right word. It's heartbreaking. Really. No, my 6 year old is not completely potty trained. No, my 6 year old cannot button his shirt independently. No, my 6 year old does not know his phone number, cannot read, does not play with peers his age... Yes, he perseverates on the same topics, talks incessantly, doesn't understand facial expressions... The questions go on, and on, and on. And I know all of this, I see it every day. But to have to put it down on paper where everyone can see it in black and white. Well, it nearly breaks my heart.
This is such a painful process. But I am so desparate for answers, or at least some guidance and help. And I'm not sure I'm going to get it. My heart is breaking and my soul is heavy.
My Side of Typical
Tuesday, November 13, 2012
Thursday, November 8, 2012
More Evaluations
On Monday Bambam goes in for another round of evaluations and tests. 4 hours of testing with a neuro-psychologist. A new Doctor that he doesn't know. In an unfamiliar setting. In an environment where he knows he's being evaluated and wants to do things "right". It is a familiar formula which always equals a very anxiety riddled little boy. I wish I could do it for him.
I do not like being the one to take him, exposing him to what is for a him a hostile environment, a painful experience. As parents we want to protect our children. Keep them from pain, anxiety, fear. But sometimes it cannot be helped. I know it is for the greater good. Making sure we are on the right track, providing him with the services and accommodations needed to reach his full potential. But that won't make Monday any easier. Sometimes being a parent is hard.
I do not like being the one to take him, exposing him to what is for a him a hostile environment, a painful experience. As parents we want to protect our children. Keep them from pain, anxiety, fear. But sometimes it cannot be helped. I know it is for the greater good. Making sure we are on the right track, providing him with the services and accommodations needed to reach his full potential. But that won't make Monday any easier. Sometimes being a parent is hard.
Thursday, November 1, 2012
Halloween
A text to my friend on Halloween 2009:
"Wow. Trick-or-treating has never been such an utter failure. Didn't want to put on his costume. Refused to wear the hat. Wouldn't knock on any doors, didn't say anything other than "home, home", threw the few pieces of candy he did get. And when we turned a corner and saw a fire pit, it was all over. Full blown meltdown, crying, screaming, trying to claw his way into my shirt, total chaos. I just want him to have fun."
That was 3 years ago. Before a diagnosis of Autism. Before we learned about Sensory Processing Disorder. And all the other idiosyncrasies that go along with the label of Autism. Knowledge is so powerful.
After 3 years of intensive (on going) therapies we have a different child.
Halloween 2012:
Bambam: "Hawoween coming"
Me: "Yes, do you want to dress up and go trick-or-treating?"
Bambam: "Yesssss"
Me: "What do you want to dress up as?"
Bambam: "Buzzzz...or Spyermn"
So I found a Spiderman costume and paid $30.00 for it. To which Mr. Fixit said, "You paid $30 for a costum that he will only wear 60% of (he won't wear anything on his head, so much for the mask) as he goes to the 3 houses of neighbors he knows and then insists on coming home?" Yup, my kid TOLD ME WHAT HE WANTED TO BE FOR HALLOWEEN. You bet I spent $30 on it, even if he doesn't end up trick-or-treating at all! He brought up Halloween unpromted, and then told me what he wanted to be. That alone was enough for me. I would have spent $100.
Yet, I still had no expectations. After several years of unsuccessful attempts at trick-or-treating, I had finally learned to just let it go. After dinner I casually asked Bambam if he wanted to put on his costume and go trick-or-treating. To which he answered a resounding "No!" OK, I told him to let me know if he decided he wanted to go and went about cleaning up the kitchen. About 15 minutes later he brought his costume to me and asked to go trick-or-treating.
I helped him get into the body suit and set the mask aside. But he pointed at it and said "I need dat". Really??? Yup, he put it on! A full over-the-head mask with 2 eye holes and tiny nose holes. This kid who has refused to even wear noise cancelling headphones has a full head mask on! And out the front door he went, running to the neighbor's house.
In the end he not only went to the 3 houses of the people he knows and talks to regularly, but up and down the next 2 streets. We had to run to keep up with him. He sometimes forgot to say "trick-or-treat" and just said "please" instead (scripting is not his thing). But he never forgot to say thank you. He kept the mask on for about 4 houses, then it ended up in the candy bag. But I couldn't have been more proud of him. My kid enjoyed Halloween. HE HAD FUN.
Best $30 I've spent all year.
"Wow. Trick-or-treating has never been such an utter failure. Didn't want to put on his costume. Refused to wear the hat. Wouldn't knock on any doors, didn't say anything other than "home, home", threw the few pieces of candy he did get. And when we turned a corner and saw a fire pit, it was all over. Full blown meltdown, crying, screaming, trying to claw his way into my shirt, total chaos. I just want him to have fun."
That was 3 years ago. Before a diagnosis of Autism. Before we learned about Sensory Processing Disorder. And all the other idiosyncrasies that go along with the label of Autism. Knowledge is so powerful.
After 3 years of intensive (on going) therapies we have a different child.
Halloween 2012:
Bambam: "Hawoween coming"
Me: "Yes, do you want to dress up and go trick-or-treating?"
Bambam: "Yesssss"
Me: "What do you want to dress up as?"
Bambam: "Buzzzz...or Spyermn"
So I found a Spiderman costume and paid $30.00 for it. To which Mr. Fixit said, "You paid $30 for a costum that he will only wear 60% of (he won't wear anything on his head, so much for the mask) as he goes to the 3 houses of neighbors he knows and then insists on coming home?" Yup, my kid TOLD ME WHAT HE WANTED TO BE FOR HALLOWEEN. You bet I spent $30 on it, even if he doesn't end up trick-or-treating at all! He brought up Halloween unpromted, and then told me what he wanted to be. That alone was enough for me. I would have spent $100.
Yet, I still had no expectations. After several years of unsuccessful attempts at trick-or-treating, I had finally learned to just let it go. After dinner I casually asked Bambam if he wanted to put on his costume and go trick-or-treating. To which he answered a resounding "No!" OK, I told him to let me know if he decided he wanted to go and went about cleaning up the kitchen. About 15 minutes later he brought his costume to me and asked to go trick-or-treating.
I helped him get into the body suit and set the mask aside. But he pointed at it and said "I need dat". Really??? Yup, he put it on! A full over-the-head mask with 2 eye holes and tiny nose holes. This kid who has refused to even wear noise cancelling headphones has a full head mask on! And out the front door he went, running to the neighbor's house.
In the end he not only went to the 3 houses of the people he knows and talks to regularly, but up and down the next 2 streets. We had to run to keep up with him. He sometimes forgot to say "trick-or-treat" and just said "please" instead (scripting is not his thing). But he never forgot to say thank you. He kept the mask on for about 4 houses, then it ended up in the candy bag. But I couldn't have been more proud of him. My kid enjoyed Halloween. HE HAD FUN.
Best $30 I've spent all year.
Wednesday, October 31, 2012
The Mean Mom
When Miracle Boy was 6, he and I spent a week at the coast. Just the two of us. It is one of my favorite memories. We spent time playing on the beach, going to the aquarium, a whale watching trip, browsing the tourist shops, and generally having a great time on our mini-vacation.
While browsing in one of the tourist shops, Miracle Boy happened upon a framed poem entitled "Mean Moms". After reading it, he quickly and with a grin deemed me a mean mom. I don't remember all of the poem, but it went something like this:
Mean moms make their children eat vegetables.
Mean moms give their children a bedtime.
Mean moms don't let their children watch TV all day.
Mean moms make sure homework is done.
etc
You get the idea. And then the last line of the poem was "The world needs more mean moms!".
Ever since that trip 11 years ago, Miracle Boy has referred to me as a mean mom, almost always with a grin. I hope this means that he understands that all my decisions, discipline, consequences, praise, etc are made with his best interest at heart. I'm certainly not a perfect parent, and I make more than my share of mistakes. But I try to put my kid's best interest at the heart of everything.
The teenage years are hard, even under the best of circumstances. And I'm not sure ours is the best of circumstances: A blended family, a special needs little brother, a step brother with his own struggles, and a biological father with major issues. Miracle Boy is a great kid, but during these teenage years I find that we are butting heads more and more. He of course is pushing the envelope, fighting for his independence, wanting to live his own life. I of course want to keep him close, protect him, try to save him from learning the lessons that I learned the hard way. I cannot tell you how many time a week I hear the words "but it's my life to live, my lessons to learn."
I just hope that during these turbulent teenage years he remembers why I'm such a "mean mom". I love that boy with every fiber of my being.
While browsing in one of the tourist shops, Miracle Boy happened upon a framed poem entitled "Mean Moms". After reading it, he quickly and with a grin deemed me a mean mom. I don't remember all of the poem, but it went something like this:
Mean moms make their children eat vegetables.
Mean moms give their children a bedtime.
Mean moms don't let their children watch TV all day.
Mean moms make sure homework is done.
etc
You get the idea. And then the last line of the poem was "The world needs more mean moms!".
Ever since that trip 11 years ago, Miracle Boy has referred to me as a mean mom, almost always with a grin. I hope this means that he understands that all my decisions, discipline, consequences, praise, etc are made with his best interest at heart. I'm certainly not a perfect parent, and I make more than my share of mistakes. But I try to put my kid's best interest at the heart of everything.
The teenage years are hard, even under the best of circumstances. And I'm not sure ours is the best of circumstances: A blended family, a special needs little brother, a step brother with his own struggles, and a biological father with major issues. Miracle Boy is a great kid, but during these teenage years I find that we are butting heads more and more. He of course is pushing the envelope, fighting for his independence, wanting to live his own life. I of course want to keep him close, protect him, try to save him from learning the lessons that I learned the hard way. I cannot tell you how many time a week I hear the words "but it's my life to live, my lessons to learn."
I just hope that during these turbulent teenage years he remembers why I'm such a "mean mom". I love that boy with every fiber of my being.
Wednesday, October 24, 2012
Least Restrictive Enironment and Inclusion
Mr. Fix it picked up Bambam from school yesterday. This does not happen very often (read hardly ever). But circumstances were such yesterday that he had the privilege of picking up the little man. (Bambam of course loved this, an afternoon with Daddy all to himself!)
So, it seems this led to a comment by Mr. Fix it last night. He indicated that he thought Bambam should be spending more time in his home classroom. This is a little bit of a touchy subject for me. I of course would love nothing more than for Bambam to BE ABLE to spend his whole school day in a typical classroom. Is this not one of our end goals? For him to function and learn in a typical classroom? But is that what is best for him right now? I don't believe so. He is simply not there yet.
Time with his typical peers is invaluable to him. He learns so much from them. But as far as being able to concentrate and learn academics in a classroom full of them? Forget it, he simply cannot do it at this time. I've been in there with him, I've seen what its like for him. There is way too much going on. He struggles to focus on one thing, to listen to directions, to even answer simple questions. In the hustle and bustle of dropping him off in the morning, he doesn't even respond to kids saying hi to him. I don't think he even hears them. There is too much background noise, movement, chaos. He doesn't know where to look. A simple task like putting his snack in his cubbie (which he could do with no help or prompting in an empty classroom) requires constant prompting and assistance when all the other kids are there. Right now, I think the best place for him to LEARN is one on one in the Learning Resource Center. And recess, gym, library, field trips, etc are the places he can interact with his typical peers.
I don't believe it will always be this way. He is miles ahead of where he was last year. But it will take more time, maturity, and lots more ability to cope before he can actually sit at a desk in a typical classroom and learn from group instruction. He will get there, I know he will. But we need to be patient.
So, it seems this led to a comment by Mr. Fix it last night. He indicated that he thought Bambam should be spending more time in his home classroom. This is a little bit of a touchy subject for me. I of course would love nothing more than for Bambam to BE ABLE to spend his whole school day in a typical classroom. Is this not one of our end goals? For him to function and learn in a typical classroom? But is that what is best for him right now? I don't believe so. He is simply not there yet.
Time with his typical peers is invaluable to him. He learns so much from them. But as far as being able to concentrate and learn academics in a classroom full of them? Forget it, he simply cannot do it at this time. I've been in there with him, I've seen what its like for him. There is way too much going on. He struggles to focus on one thing, to listen to directions, to even answer simple questions. In the hustle and bustle of dropping him off in the morning, he doesn't even respond to kids saying hi to him. I don't think he even hears them. There is too much background noise, movement, chaos. He doesn't know where to look. A simple task like putting his snack in his cubbie (which he could do with no help or prompting in an empty classroom) requires constant prompting and assistance when all the other kids are there. Right now, I think the best place for him to LEARN is one on one in the Learning Resource Center. And recess, gym, library, field trips, etc are the places he can interact with his typical peers.
I don't believe it will always be this way. He is miles ahead of where he was last year. But it will take more time, maturity, and lots more ability to cope before he can actually sit at a desk in a typical classroom and learn from group instruction. He will get there, I know he will. But we need to be patient.
Tuesday, October 16, 2012
The Not So Fun House
We are fortunate enough to have a small vacation house about 3 hours from home. Every time we go there, I thank my lucky stars that we had this house before Bambam was born. He has been going there since he was 10 days old. To him it is just an extension of home, a place he is comfortable and free to be just him. And all his favorite things are just a bike ride away, the airport, the horse stables, the pool. Without this house, we would probably not have had a vacation in the last 6.5 years. And sometimes we just need to get away.
Last weekend we went to our beloved "fun house" as Bambam calls it. We hadn't been in over a month and were looking forward to a relaxing weekend. But it was not to be. The drive over, which normally takes a little less than 3 hours, ballooned to over 4.5 due to an accident that blocked the highway in both directions. Perhaps this should have been a sign to turn around and go home as we sat for over an hour without moving. But Bambam was a rockstar. He played with his airplanes and looked at his books and really did a great job of going with the flow.
Since we arrived so late, we barely had time to eat dinner, read a couple of books, and head off to bed. The first night's sleep is always a little bit shakey with the change in venue. But it usually only takes one night and then he's back on track. Not this time.
When we got up Saturday morning it quickly became obvious that hunting season had started. Gun shots went off frequently all day long. And Bambam fell apart a little bit more each time he heard one. His whole body would get stiff. If he was close to me he would grab hold and squeeze with all his might. There was crying and teeth grinding and basically an all out "fight or flight" alert all weekend.
It was painful to see my sweet boy like this. It felt like we had regressed 2 years. His anxiety level hadn't been this aroused in a very long time. His words were unclear, and when we could understand them they made little sense fleeting from one thing to another. Not even his favorite things could calm him. He was quite simply, a mess.
I did manage to get him to the pool Saturday afternoon where he found a quiet, empty corner and proceeded to jump in, get out, jump in, get out, jump in...over and over again, almost obsessively, seeking some comfort. And as I watched him, I cried. Sitting by the edge of a public pool, the tears streamed down my face as I watched my boy uncomfortable in his own skin, unable to help him, unable to provide him the comfort he was so desperately seeking. Sometimes I hate this.
And then finally, finally later in the weekend he found his words. "Guns are too loud, they scare me." And with that one sentence, a way to express what he was feeling, a way to gain some semblance of control, he began to come back.
Last weekend we went to our beloved "fun house" as Bambam calls it. We hadn't been in over a month and were looking forward to a relaxing weekend. But it was not to be. The drive over, which normally takes a little less than 3 hours, ballooned to over 4.5 due to an accident that blocked the highway in both directions. Perhaps this should have been a sign to turn around and go home as we sat for over an hour without moving. But Bambam was a rockstar. He played with his airplanes and looked at his books and really did a great job of going with the flow.
Since we arrived so late, we barely had time to eat dinner, read a couple of books, and head off to bed. The first night's sleep is always a little bit shakey with the change in venue. But it usually only takes one night and then he's back on track. Not this time.
When we got up Saturday morning it quickly became obvious that hunting season had started. Gun shots went off frequently all day long. And Bambam fell apart a little bit more each time he heard one. His whole body would get stiff. If he was close to me he would grab hold and squeeze with all his might. There was crying and teeth grinding and basically an all out "fight or flight" alert all weekend.
It was painful to see my sweet boy like this. It felt like we had regressed 2 years. His anxiety level hadn't been this aroused in a very long time. His words were unclear, and when we could understand them they made little sense fleeting from one thing to another. Not even his favorite things could calm him. He was quite simply, a mess.
I did manage to get him to the pool Saturday afternoon where he found a quiet, empty corner and proceeded to jump in, get out, jump in, get out, jump in...over and over again, almost obsessively, seeking some comfort. And as I watched him, I cried. Sitting by the edge of a public pool, the tears streamed down my face as I watched my boy uncomfortable in his own skin, unable to help him, unable to provide him the comfort he was so desperately seeking. Sometimes I hate this.
And then finally, finally later in the weekend he found his words. "Guns are too loud, they scare me." And with that one sentence, a way to express what he was feeling, a way to gain some semblance of control, he began to come back.
Wednesday, October 10, 2012
The Onslaught of Mail
The mail at our house has gotten a bit ridiculous. Now, instead of asking if anyone has gotten the mail today we ask if anyone has gotten Miracle Boy's mail. Miracle Boy is a fairly good student and did reasonable on the SAT. Apparently that means every school in the country has to send him mail. And I'm not kidding. He gets at least 8 pieces of mail a day. Every.Single.Day. Our mail box is littered with postcards, letters, DVDs, and 8 x 10 full color, glossy, multi-page catalogs. I cannot imagine the expense that goes into producing these. Perhaps tuition wouldn't be so high if they weren't sending out these catalogs.
I do not remember this from 30 years ago when I was a Senior in high school. And I wasn't a slouch. I was in a comparable position to Miracle Boy. Yet I do no remember getting an onslaught of advertising from every college or university in the country. I find it irritating. And may possibly wallpaper the playroom in college advertising. It is bright and colorful and full of promising looking young people. Perhaps it will inspire the other 2 kids.
I do not remember this from 30 years ago when I was a Senior in high school. And I wasn't a slouch. I was in a comparable position to Miracle Boy. Yet I do no remember getting an onslaught of advertising from every college or university in the country. I find it irritating. And may possibly wallpaper the playroom in college advertising. It is bright and colorful and full of promising looking young people. Perhaps it will inspire the other 2 kids.
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