Bambam was invited to a classmate's birthday party. This is HUGE. This is the first birthday party invitation he's received. Granted, the entire class was invited. But they included Bambam. I was both touched and intimidated at the same time.
I do not remember what a typical 7 year old birthday party is like. Bambam has never had a birthday party with his peers. His parties include our family plus both grandparents. And even that can sometimes overwhelm him. I can't imagine him at a party with 20+ kids.
On the plus side, the party was at the indoor bounce place. Bambam loves the bounce place. Imagine, a boy who's stim is to jump; the indoor bounce plance is like heaven to him. Jumping grounds him, calms him, helps him to block out overwhelming stimuli. He begs to go there ALL.THE.TIME. Plus, that probably means that there will not be organized activities, but rather free play time. This might just work.
The invitation asked for an RSVP. I would have called the parents anyway. In a situation like this, I want to make sure they know who Bambam is. That they understand his... uniqueness. So I called and clumsily ask the dad if he knew who Bambam was. And I will forever remember his response. "Of course I do. He's the cute little blond boy with the aide." And that just about made my heart melt. What a sweet way to identy my boy. Not "the special needs boy" which honestly doesn't offend me, he is a special needs child. I just really thought that he identified Bambam in a very sweet, respectful way. And I knew we had to attend the party. Especially after he went on to say that his son has specifically asked to invite Bambam.
So, Bambam and I went shopping to find a birthday present. I had asked the dad what his child liked so we were armed with good info. And, as luck would have it, this little boy loves sports. Just like Bambam, any sport with a ball is awesome. Bambam picked a football with the team logo from our local university. Then he helped me wrap it in a gift bag with tissue. It may not have been the prettiest present, but Bambam was so proud.
He was so excited the morning of the party. He almost drove us nuts. It was all he talked about. All morning long we heard "go to bounce house now?", "go to party now?", "see my friends now?". Over and over until we finally left.
When we arrived it was a little chaotic and Bambam hung back for a little while. But with some promting, he greeted the boy with a "Happy Birthday" and gave him the gift. Then he ran off to go bouncing. Throughout the 2 hour party, the other kids would invite Bambam to join in what ever game they were playing, and sometimes he did. But when the noise and chaos got to be too much, he would go find a quieter corner to bounce by himself. I was so proud of him that he knew what he needed and was able to get it without a single melt down. This is true progress. He even invited another little boy from his class (who is shy and reserved) to come play with him in the quieter corner.
When it was time for cake and presents, we were all ushered into a room that was already set up. I knew this would be the hardest part for Bambam. The room was a little hollow and echoed. With 22 ampted up kids and half a dozen parents, it was loud and chaotic. A recipe for sensory overload. Bambam took a seat next to the shy little boy he had previously asked to play. He ate about half his cake before he turned to me and said "I need to go home now." Not wanting him to go home yet, I suggested he go find a quiet corner and jump for a while. He ran off with a smile.
When it was time to open presents, I called him back to the room and he watched from the doorway as the birthday boy opened all his presents. After which, all the kids ran out of the room to go bounce and play. And you know what? That football, the one Bambam had brought for the birthday boy, it was the favorite present. The birthday boy carried it all around the bounce place. And all the other kids wanted to play with it. And Bambam was grinning from ear to ear as he ran after them.
That was about the best birthday party ever.
I will forever be greatfull to the amazing kids in Bambam's class. They are caring, understanding, tolerant, accepting, etc. The list goes on and on. They amaze me on a daily basis. They are being lead and taught by wonderful adults. The parents of the birthday boy were so gracious. They both went out of their way to make sure he was included, comfortable, and having fun. The mom even gave Bambam the balloons at the end of the party. This was a success on all levels.
My Side of Typical
Sunday, December 16, 2012
Thursday, December 13, 2012
Seven!
My boy is turning 7. My sweet,cherubic, happy baby boy is now a big kid of 7. I'm not sure how this happened in the blink of an eye, but it did. You'd think I'd be used to it, he's not the first. But it still makes me pause.
First grade. He's in first grade now. Not quite at school all day (he comes home an hour early, that seems to be all his sensory system can take) but still much longer than kindergarten. And I'm so proud of him.
He still spends much of his day in the LRC with a one to one aid. But he is now ASKING to go to his class. He will sit with the other kids for 20 minutes as they read to him. He participates in art and is so proud of his masterpieces. He works with his teacher to check in all the kids and their homework in the morning. He knows and greets all his classmates by name. He goes to library with them and uses a quiet voice (wish I knew how they accomplished this, he still only uses very loud at home). He wants to be with them, interacting with them. And I'm so proud.
He is now eating lunch in the cafeteria with his class. And actually eating his lunch. Without an aid by his side. And going to recess with all the other kids. And not getting overwhelmed or melting down. He's playing with his peers. And I'm so proud.
He is taking swimming lessons. I sometimes wondered if he would take lessons of any kind. But now he's in swimming. And he loves it. He looks forward to seeing Teacher Brad. And Teacher Brad is awesome. Honestly, about 10 minutes is spent on actual swim lesson stuff. The other 20 are spent on more social interacting. But my kid is kicking, and using "big arms", and blowing bubbles, and going underwater. There is no actual swimming yet, but I know there will be in his own time. And I am so pround.
He has grown and gained skills in so many ways. I simply can't write about them all. My baby is now 7 and I couldn't be prouder of him. Happy birthday big boy!
First grade. He's in first grade now. Not quite at school all day (he comes home an hour early, that seems to be all his sensory system can take) but still much longer than kindergarten. And I'm so proud of him.
He still spends much of his day in the LRC with a one to one aid. But he is now ASKING to go to his class. He will sit with the other kids for 20 minutes as they read to him. He participates in art and is so proud of his masterpieces. He works with his teacher to check in all the kids and their homework in the morning. He knows and greets all his classmates by name. He goes to library with them and uses a quiet voice (wish I knew how they accomplished this, he still only uses very loud at home). He wants to be with them, interacting with them. And I'm so proud.
He is now eating lunch in the cafeteria with his class. And actually eating his lunch. Without an aid by his side. And going to recess with all the other kids. And not getting overwhelmed or melting down. He's playing with his peers. And I'm so proud.
He is taking swimming lessons. I sometimes wondered if he would take lessons of any kind. But now he's in swimming. And he loves it. He looks forward to seeing Teacher Brad. And Teacher Brad is awesome. Honestly, about 10 minutes is spent on actual swim lesson stuff. The other 20 are spent on more social interacting. But my kid is kicking, and using "big arms", and blowing bubbles, and going underwater. There is no actual swimming yet, but I know there will be in his own time. And I am so pround.
He has grown and gained skills in so many ways. I simply can't write about them all. My baby is now 7 and I couldn't be prouder of him. Happy birthday big boy!
Tuesday, December 4, 2012
My 30 Days of Thanks
My Daily Facebook posts during the month of November:
Day 1: It's November, the month of thanks. Today I'm thankful for a successful Halloween yesterday! Hope everyone had a safe and fun holiday.
Day 2: Spent the morning on a college visit with Miracle Boy. Reminded me how much I loved college. So today I'm thankful for all the opportunities he has coming up. What an exciting time for him.
Day 3: Today I'm thankful for our health insurance. Although it dosen't cover everything, actually not a lot of Bambam's therapies, I am still thankful for what it does cover.
Day 4: Awesome day. Today I'm thankful for a 75 degree sunny day in November!
Day 5: Today I am thankful for no phone call from the school. Some days it's the little things.
Day 6: Today, like many others, I'm thankful for the right to vote. I sent in my ballot 2 weeks ago, even more thankful for our state's mail in ballots.
Day 7: Today I am so very thankful that this election is over. Enough said.
Day 8: Today I'm thankful that Bambam slept until 6:30! Time change is always hard.
Day 9: Today I'm thankful that I don't work on Fridays. Which really means I have 5 hours in which to make all my phone calls, schedule apts, pay bills, clean the house, do laundry, etc. But that's OK, cuz I can do it with the stereo on and no one pestering me! Have a great Friday everyone.
Day 10: Today I'm thankful for the fun house! And snow, and college football, and homemade chili in a bread bowl. Life is good.
Day 11: Today, like many others, I am thankful for our veterans who serve our country to protect our freedoms. I'm also thankful for a safe drive home from the fun house and for the portable DVD player.
Day 12: Today I'm thankful for my boss. When I told him that I was going to miss work yet again today his response was "Don't worry about it. You need to take care of Bambam first." He is a wonderful person who embodies patience and understanding and is very accommodating. When I stumbled into this job a couple of years ago, it was a blessing. This is clearly where I am supposed to be and I'm very grateful.
Day 13: Today I'm thankful for Bambam's swim teacher. He is a college student who teaches swimming on the side. And he is awesome. He's patient and understanding and most importantly fun. He keeps Bambam engaged and motivated and honestly gets more out of him than I thought possible. My kid will learn to swim, despite all his special needs!
Our world is full of amazing people if we just open our eyes and look. Everyday heroes who go the extra mile to make someone else's life just a little easier or better. I'm very thankful that Bambam is surrounded by such people.
Day 14: Today I'm thankful for Miracle Boy. He is a great big brother. When Bambam had a bad morning on Monday, Miracle Boy stayed with him so I could go to work for a couple of hours. His words, "Don't worry mom, I can handle it. He'll be fine." And he was.
Day 15: I couldn't possibly go through the month of thanks without again saying how thankful I am for our Elementary School, and Mr. D, and Mrs. M, and Mrs. E, and Mrs. H, and Miss C, and Mr. P, and all the other teachers, specialists, and aides who give 120% everyday to help Bambam learn and grow. I know I sound like a broken record, but it truly does take a village.
Day 16: Today I'm thankful for my personal chef, Mr. Fixit. Even though Bambam and I get home hours before he does, he still makes dinner every night. And it is rarely anything less than fantastic. He is an amazing cook.
Day 17: Today I'm thankful for my parents. They are fantastic grandparents. I don't think my children and I would have survived without them. And although they sometimes drive me nuts, I know that no one else loves my kids as much as they do.
Day 18: I'm thankful for a warm house and yummy food on the table. We often forget how many people in this world don't have these basic necessities. I'm thankful that we do not have to worry about where we will sleep and what we will eat. We are truly blessed.
Day 19: Today I am thankful for a very fun evening out with my girlfriends. Thank you ladies, it was a much needed break.
Day 20: Today I'm thankful for the treadmill in my basement. I'm a fair weather runner and would never run in the winter time without it.
Day 21: Today I'm thankful for a 4 day holiday weekend! Be safe in your travels and have a fantastic Thanksgiving.
Day 22: As I look around my Thanksgiving table today, I am overcome with all the blessings I see:
Bambam who is honestly the sweetest, happiest child I have ever known. For his smile that not only lights up his face but his whole body. He quite simply glows. You can't help but smile back. Even strangers in the store respond to his glowing smile and happy disposition.
Miracle Boy who is so full of opportunity, potential and promise. My "typical kid" who has given me the opportunity to experience "normal parenting", whatever that is. This young man who at 17 still likes to have date night with his mom. I am so very greatful for him.
The Quiet One who is, well, quiet. I'm not sure our household could have accommodated another noisy, high energy child. The Quiet One has merged into the household with ease. The changes I've seen in him over the past year and a half are truly a blessing. He is growing in countless ways. Watching him emerge as a young man is amazing.
And of course Mr. Fixit. I am so grateful for him. He provides for us very comfortably, he fixes anything that breaks, he makes dinner every night... The list goes on and on. I'm thankful for my "tag team" partner. As anyone with a special needs child knows, sometimes you just have to be a tag team.
I have so many blessings in my life.
Day 23: Today I'm thankful for the small airport at the fun house. We visit this airport every day that we are there. The employees are kind and accepting of Bambam's obsession with airplanes. They allow him to get up close and personal with the airplanes, he often gets to sit in one. I think they've adopted him as their mascot. Again, everyday people going the extra mile.
Day 24: Today I'm even more thankful for the iPad and headphones. As we headed off to a fun college football viewing, we could feel confident that Bambam could join us and be successful even in a crowded, noisy room. Yeah for technology!
Day 25: Today I'm thankful for all the fun, festive activities in this small community where our fun house is located. There is lots to do for the teenagers as well as Bambam. Its a great way to kick off the holiday season.
Day 26: Today I'm thankful for my sister, she is amazing. She is always there for me, to celebrate, to commiserate, to cheer me on, to pick me up, to do whatever is needed. I would not be the person I am today without her. She inspires me to be better.
Day 27: Today I'm thankful for modern medicine. I know the decision to medicate or not is a very personal one. But for us, medication has made life so much better (even possible) for Bambam. He simply cannot function without it. I'm very greatful that this option is available.
Day 28: Today I'm thankful for all the people who spend their efforts, time, and money on research, education, and acceptance of autism, or any special need. They make the world just a little bit better for everyone.
Day 29: Today I'm thankful for Bambam's classmates. They are an amazing group of young people led my amazing adults. They are accepting, understanding, and just plain nice to Bambam. And not just at school. When we run into one of them in town, they always run over and say hi and talk to Bambam. It simply warms my heart. Inclusions is not only beneficial to the special needs child, but to the whole class of typical kids as well. I really think we are raising a whole generation of individuals who will make our world a better place.
Day 30:Today I'm thankful the chance to step back and be reminded of all the things I have to be thankful for. I am truly blessed.
Day 1: It's November, the month of thanks. Today I'm thankful for a successful Halloween yesterday! Hope everyone had a safe and fun holiday.
Day 2: Spent the morning on a college visit with Miracle Boy. Reminded me how much I loved college. So today I'm thankful for all the opportunities he has coming up. What an exciting time for him.
Day 3: Today I'm thankful for our health insurance. Although it dosen't cover everything, actually not a lot of Bambam's therapies, I am still thankful for what it does cover.
Day 4: Awesome day. Today I'm thankful for a 75 degree sunny day in November!
Day 5: Today I am thankful for no phone call from the school. Some days it's the little things.
Day 6: Today, like many others, I'm thankful for the right to vote. I sent in my ballot 2 weeks ago, even more thankful for our state's mail in ballots.
Day 7: Today I am so very thankful that this election is over. Enough said.
Day 8: Today I'm thankful that Bambam slept until 6:30! Time change is always hard.
Day 9: Today I'm thankful that I don't work on Fridays. Which really means I have 5 hours in which to make all my phone calls, schedule apts, pay bills, clean the house, do laundry, etc. But that's OK, cuz I can do it with the stereo on and no one pestering me! Have a great Friday everyone.
Day 10: Today I'm thankful for the fun house! And snow, and college football, and homemade chili in a bread bowl. Life is good.
Day 11: Today, like many others, I am thankful for our veterans who serve our country to protect our freedoms. I'm also thankful for a safe drive home from the fun house and for the portable DVD player.
Day 12: Today I'm thankful for my boss. When I told him that I was going to miss work yet again today his response was "Don't worry about it. You need to take care of Bambam first." He is a wonderful person who embodies patience and understanding and is very accommodating. When I stumbled into this job a couple of years ago, it was a blessing. This is clearly where I am supposed to be and I'm very grateful.
Day 13: Today I'm thankful for Bambam's swim teacher. He is a college student who teaches swimming on the side. And he is awesome. He's patient and understanding and most importantly fun. He keeps Bambam engaged and motivated and honestly gets more out of him than I thought possible. My kid will learn to swim, despite all his special needs!
Our world is full of amazing people if we just open our eyes and look. Everyday heroes who go the extra mile to make someone else's life just a little easier or better. I'm very thankful that Bambam is surrounded by such people.
Day 14: Today I'm thankful for Miracle Boy. He is a great big brother. When Bambam had a bad morning on Monday, Miracle Boy stayed with him so I could go to work for a couple of hours. His words, "Don't worry mom, I can handle it. He'll be fine." And he was.
Day 15: I couldn't possibly go through the month of thanks without again saying how thankful I am for our Elementary School, and Mr. D, and Mrs. M, and Mrs. E, and Mrs. H, and Miss C, and Mr. P, and all the other teachers, specialists, and aides who give 120% everyday to help Bambam learn and grow. I know I sound like a broken record, but it truly does take a village.
Day 16: Today I'm thankful for my personal chef, Mr. Fixit. Even though Bambam and I get home hours before he does, he still makes dinner every night. And it is rarely anything less than fantastic. He is an amazing cook.
Day 17: Today I'm thankful for my parents. They are fantastic grandparents. I don't think my children and I would have survived without them. And although they sometimes drive me nuts, I know that no one else loves my kids as much as they do.
Day 18: I'm thankful for a warm house and yummy food on the table. We often forget how many people in this world don't have these basic necessities. I'm thankful that we do not have to worry about where we will sleep and what we will eat. We are truly blessed.
Day 19: Today I am thankful for a very fun evening out with my girlfriends. Thank you ladies, it was a much needed break.
Day 20: Today I'm thankful for the treadmill in my basement. I'm a fair weather runner and would never run in the winter time without it.
Day 21: Today I'm thankful for a 4 day holiday weekend! Be safe in your travels and have a fantastic Thanksgiving.
Day 22: As I look around my Thanksgiving table today, I am overcome with all the blessings I see:
Bambam who is honestly the sweetest, happiest child I have ever known. For his smile that not only lights up his face but his whole body. He quite simply glows. You can't help but smile back. Even strangers in the store respond to his glowing smile and happy disposition.
Miracle Boy who is so full of opportunity, potential and promise. My "typical kid" who has given me the opportunity to experience "normal parenting", whatever that is. This young man who at 17 still likes to have date night with his mom. I am so very greatful for him.
The Quiet One who is, well, quiet. I'm not sure our household could have accommodated another noisy, high energy child. The Quiet One has merged into the household with ease. The changes I've seen in him over the past year and a half are truly a blessing. He is growing in countless ways. Watching him emerge as a young man is amazing.
And of course Mr. Fixit. I am so grateful for him. He provides for us very comfortably, he fixes anything that breaks, he makes dinner every night... The list goes on and on. I'm thankful for my "tag team" partner. As anyone with a special needs child knows, sometimes you just have to be a tag team.
I have so many blessings in my life.
Day 23: Today I'm thankful for the small airport at the fun house. We visit this airport every day that we are there. The employees are kind and accepting of Bambam's obsession with airplanes. They allow him to get up close and personal with the airplanes, he often gets to sit in one. I think they've adopted him as their mascot. Again, everyday people going the extra mile.
Day 24: Today I'm even more thankful for the iPad and headphones. As we headed off to a fun college football viewing, we could feel confident that Bambam could join us and be successful even in a crowded, noisy room. Yeah for technology!
Day 25: Today I'm thankful for all the fun, festive activities in this small community where our fun house is located. There is lots to do for the teenagers as well as Bambam. Its a great way to kick off the holiday season.
Day 26: Today I'm thankful for my sister, she is amazing. She is always there for me, to celebrate, to commiserate, to cheer me on, to pick me up, to do whatever is needed. I would not be the person I am today without her. She inspires me to be better.
Day 27: Today I'm thankful for modern medicine. I know the decision to medicate or not is a very personal one. But for us, medication has made life so much better (even possible) for Bambam. He simply cannot function without it. I'm very greatful that this option is available.
Day 28: Today I'm thankful for all the people who spend their efforts, time, and money on research, education, and acceptance of autism, or any special need. They make the world just a little bit better for everyone.
Day 29: Today I'm thankful for Bambam's classmates. They are an amazing group of young people led my amazing adults. They are accepting, understanding, and just plain nice to Bambam. And not just at school. When we run into one of them in town, they always run over and say hi and talk to Bambam. It simply warms my heart. Inclusions is not only beneficial to the special needs child, but to the whole class of typical kids as well. I really think we are raising a whole generation of individuals who will make our world a better place.
Day 30:Today I'm thankful the chance to step back and be reminded of all the things I have to be thankful for. I am truly blessed.
Monday, November 26, 2012
That Kid
When Miracle Boy was little and I would take him places that kids like to go, I always noticed That Kid. You know what I'm talking about. That Kid who is just a little too noisy, a bit too rambunctious, too rough or wild, etc. And I would watch That Kid and wonder: Where are his parents? Where is the discipline? What is wrong with him? Yes, I am ashamed to admit that I would watch with judging eyes. Never bothering to wonder what his story was, what his circumstances were.
Now, I have That Kid. As I sit here at the edge of the pool watching Bambam play in the water, I notice that he's splashing a little too hard. Jumping a little too close to the basketball game. Running full speed into the water. He's careful not to actually run into, jump into, or touch anyone else, but he sure gets close and splashes A LOT. And it does not matter how many time I say slow down, calm down, move down the pool; this is who he is. He craves this impact with the water. Its part of the sensory thing. I cannot take him to a pool and expect him to act otherwise, it will never happen.
So I look around at the other parents and I wonder. Which ones are asking themselves where are his parents. And which ones are asking why he's not disciplined. And which ones are wondering what is wrong with him. Because I know it is happening. I know because once upon a time I was That Parent.
Now, I have That Kid. As I sit here at the edge of the pool watching Bambam play in the water, I notice that he's splashing a little too hard. Jumping a little too close to the basketball game. Running full speed into the water. He's careful not to actually run into, jump into, or touch anyone else, but he sure gets close and splashes A LOT. And it does not matter how many time I say slow down, calm down, move down the pool; this is who he is. He craves this impact with the water. Its part of the sensory thing. I cannot take him to a pool and expect him to act otherwise, it will never happen.
So I look around at the other parents and I wonder. Which ones are asking themselves where are his parents. And which ones are asking why he's not disciplined. And which ones are wondering what is wrong with him. Because I know it is happening. I know because once upon a time I was That Parent.
Tuesday, November 13, 2012
Broken Hearted
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.
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.
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.
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