This morning as I was cleaning up the kitchen, I heard The Boy from the other room. Spider-Man and The Hulk were saving the day. Careening through the living room to save someone. I stopped what I was doing and I listened as he played. And I wanted to stop time. I wanted to freeze the moment and forever etch it into my memory. A moment in time to cherish.
You see, this was the boy who had no words until he was well over 3. The child who had no imaginative play at 6 years old. None. He simply did not know how to play. We spent hours, months even, trying to show him how to play.
Everyday after school we would take Mr. Potato Head and show The Boy how to build him. And then how to play with him. "Where would he go?" We would ask. And always the answer would be "da stowe". Because that's where we went, to the grocery store. The Boy had no imaginative play. Had no idea how to even begin. He only knew what we did, so Mr. Potato Head went to the store.
We painstakingly worked on it. Every day. We took Mr. Potato Head and the Mrs. and Jr. to the park and to the pool and to the library. All in our basement.
And slowly, over months, The Boy began to play with Mr. Potato Head and his family. Always the same scripts that we had played out for him before. Word for word, we would hear Papa, or Mama, or Jr jump in the pool or swing on the swings or buy a pear at the store. But it was a start. An attempt at imaginative play. Something he knew and was familiar with.
So we expanded our repertoire. We played with Buzz Lightyear and Woody, Dusty and Leadbottom and Ripslinger. What would they do, we asked. And the scripts came from the movie. Nothing novel. So we offered ideas, came up with our own storylines for these beloved characters. And he watched, enraptured with what his buddies were doing. And then he would mimic. And we were so excited. Because mimicking was a new skill. We celebrate the small things.
It took months. A year perhaps. But slowly, cautiously, he began to play. Novel story lines emerged. He expanded his characters to Paw Patrol, Jake and the Pirates, Doc McStuffins. All characters he knew from his shows. And then he began to play with stuffed animals and creates scenes outside in the yard. And when I stopped to watch or listen, I was amazed.
This is a gift: A non-verbal little boy who, a few years later, is now playing in the living room with Spider-Man and The Hulk, creating scenarios where the hero save the day. I want to remember this forever.
My Side of Typical
Showing posts with label developmentally delayed. Show all posts
Showing posts with label developmentally delayed. Show all posts
Saturday, July 25, 2015
Friday, February 20, 2015
Never Too Late
The Boy is reading.
READING
A BOOK
My boy is READING A BOOK!
WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.
A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.
With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.
And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.
I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are.
A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.
That kid inspires me. It is never too late.
READING
A BOOK
My boy is READING A BOOK!
WOW! I didn't know if I'd ever type that sentence. And it is amazing, awesome, wonderful, any and all of those adjectives. I am truly astounded. And honestly, a little bit relieved. I have been telling anyone who would listen for the past 2 years that my boy would learn to read. I didn't care it if took until he was 10 or 20 or 30, my boy would read. I knew he was capable, we just had to figure out how to teach him.
A year ago he was no where near ready for this. Oh, we tried. How we tried. We worked on phonics for 2 years. But he just never got it. Phonics was not working for him. At all. He knew the sounds of the letters, he just couldn't translate that into sounding out words. It was frustrating. Very frustrating. For everyone involved.
With the switch to the new school, we switched to a sight reading program. After all, The Boy has a memory like a steel trap. He forgets nothing. (It often comes back to haunt me.) So the new school thought we should capitalize on that to start him on the path to reading. So we put it in his IEP in October; he would start the Edmark Reading Program with the goal of learning 10 sight words this school year. I know, that's not a lofty goal. But with a 9 year old that was not reading at all, we wanted an attainable goal. Rather have a realistic goal that he shatters than a lofty goal he cannot reach. It did not mean that they would stop teaching new words once he reached 10.
And stop they did not. He has now surpassed his goal of 10 words, knowing about twice that many. And the first semester has just ended, we still have half the school year to go! He's leaning 2 new words a week. Small books from the program come home for him to read at night. My boy is reading books to me. This. is. HUGE.
I can honestly tell you that it does not matter if they are 4 years old or 9 years old, the first time your child reads a book to you the joy, pride, excitement, and just plain awesomeness you will feel is the same. It really does not matter how old they are.
A very wise therapist once told me that there are no expiration dates on developmental milestones. None indeed. The Boy has never met a milestone "on time". Not one. Yet he continues to meet them, even master some; all in his own time, in his own way. And we have learned to not only accept his journey, but to respect it. It is an amazing journey to watch.
That kid inspires me. It is never too late.
Wednesday, February 19, 2014
Community
I sat with another parent at Special Olympics basketball practice last night and had a nice visit. I've sat with them before, but we don't know each other well and the conversation has always been of the "acquaintance" variety. You know what I mean, how are you, how are your kids, do you have fun plans for the weekend, that sort of thing.
But last night, it became more than that. It became community. A gathering of those with similar stories, sharing and supporting each other. His daughter, a 10 year old with Downs, is a 5th grader at Bambam's school. The kids know each other well and really enjoy each other's company. They spend time together every day at school in the LRC (Learning Resource Center). All the way to SO basketball, Bambam gleefully repeats "M will be there. M is on her way. I will play with M." As soon as the last one arrives at basketball, they run to each other and hug. They clearly are friends.
But as for us parents, we seem to have kept a small distance. At least until last night. When we began to share stories that only special needs parents have. You know, those of the "pick up your 8 year old who is melting down in the middle of the furniture store and run for the door" sort of variety. The "I yelled at the janitor who made a comment about my kids behavior" kind of stories. The "if the school stops me at pick up one more time to tell me about another behavior mishap I will loose it" kind. The "yes, my 10 year old is still wearing a life vest in the pool, you staring is not making it any easier" sort of thing. The kind that special needs parents experience almost every damn day.
That's not to say that those moments don't occur when raising typical kids. I know they do. I'm raising (or have almost raised) 2 of those also. But its different. It just is. And unless you are raising a special needs child, its hard to really understand how different it is.
I have great support. Friends, family on both sides, therapists and teachers who are so much more than that. And, I have my sister who is always, ALWAYS there for me. Any time of the day or night she is just a text or phone call away. She will do what ever she can to help me at any time. I know this. I feel this all the way to my bones. She truly loves me and would do anything for me. And I love her to eternity for this.
But still, as much as she wants to and tries to, she really does not get it. Yes, she always listens as long as I need her to, she never judges, she is always supportive and positive. She sympathizes, and empathizes, and truly tries and wants to understand. I know she does. But how can she? She has never walked a path anywhere near similar to this one. How can she know what its like to have the responsibility of raising a special needs child 24/7. The answer is that she can't. There is no shame or fault in that. That is just the way it is. She does as much for me as she humanly can and I am so grateful and in debt to her for it.
But community, the gathering of those with similar stories, that is what I need sometimes. I cannot go down this road without it. Someone who with just one look can say I get it. I really get it. I've been there. No explanations or excuses needed. In fact, you may not even need to finish the sentence or thought, they could do it for you. They know it, experience it, live it. And I feel myself exhale, relax, feel like I'm coming home.
But last night, it became more than that. It became community. A gathering of those with similar stories, sharing and supporting each other. His daughter, a 10 year old with Downs, is a 5th grader at Bambam's school. The kids know each other well and really enjoy each other's company. They spend time together every day at school in the LRC (Learning Resource Center). All the way to SO basketball, Bambam gleefully repeats "M will be there. M is on her way. I will play with M." As soon as the last one arrives at basketball, they run to each other and hug. They clearly are friends.
But as for us parents, we seem to have kept a small distance. At least until last night. When we began to share stories that only special needs parents have. You know, those of the "pick up your 8 year old who is melting down in the middle of the furniture store and run for the door" sort of variety. The "I yelled at the janitor who made a comment about my kids behavior" kind of stories. The "if the school stops me at pick up one more time to tell me about another behavior mishap I will loose it" kind. The "yes, my 10 year old is still wearing a life vest in the pool, you staring is not making it any easier" sort of thing. The kind that special needs parents experience almost every damn day.
That's not to say that those moments don't occur when raising typical kids. I know they do. I'm raising (or have almost raised) 2 of those also. But its different. It just is. And unless you are raising a special needs child, its hard to really understand how different it is.
I have great support. Friends, family on both sides, therapists and teachers who are so much more than that. And, I have my sister who is always, ALWAYS there for me. Any time of the day or night she is just a text or phone call away. She will do what ever she can to help me at any time. I know this. I feel this all the way to my bones. She truly loves me and would do anything for me. And I love her to eternity for this.
But still, as much as she wants to and tries to, she really does not get it. Yes, she always listens as long as I need her to, she never judges, she is always supportive and positive. She sympathizes, and empathizes, and truly tries and wants to understand. I know she does. But how can she? She has never walked a path anywhere near similar to this one. How can she know what its like to have the responsibility of raising a special needs child 24/7. The answer is that she can't. There is no shame or fault in that. That is just the way it is. She does as much for me as she humanly can and I am so grateful and in debt to her for it.
But community, the gathering of those with similar stories, that is what I need sometimes. I cannot go down this road without it. Someone who with just one look can say I get it. I really get it. I've been there. No explanations or excuses needed. In fact, you may not even need to finish the sentence or thought, they could do it for you. They know it, experience it, live it. And I feel myself exhale, relax, feel like I'm coming home.
Monday, January 20, 2014
Patience and Understanding
I've waited a week to write about this. My emotions are still raw. I'm trying so hard to practice the patience and understanding I want others to give Bambam, but honestly I'm struggling with it.
About a week ago, one of my "friends" approached me to discuss an incident that occurred at her house 2 months ago. We were at a gathering that included kids, about 8 total ranging in age from 7 to 13. As she told it, the kids were all in the room above the garage (with no adults present) when Bambam started throwing things. So one of the 13 year old girls thought it was a good idea to LOCK HIM THE BATHROOM. At that point, one of the other 13 year old girls tackled her in order to prevent that from happening (I love that child). As you can imagine, a whole fiasco ensued.
So my "friend" said that basically Bambam, wasn't welcome in her home anymore as he caused this incident. Um WHAT?!?! I have sooooo many issues with this I don't even know where to begin.
The most obvious issue is since when is the victim of a bullying incident the one to blame? And make no mistake this is a severe case of bullying. There is NEVER A REASON TO LOCK A 7 YEAR OLD SPECIAL NEEDS CHILD IN THE BATHROOM. Adults go to jail for that shit. YES, I'm mad.
I gave her this analogy: if there is a bullying incident at a school and another child stops the bully with violence, the school would never call the parent of the bullying victim and tell them he wasn't welcome at their school anymore as he caused the violence. It is ridiculous. Not to mention that in this case the victim is a 7 year old, with significant developmental delays. And the other kids are 13. Really? Your going to blame the weakest link? The one who has no way to defend himself? I am so disappointed.
She then suggested that we get a sitter and leave Bambam at home whenever we have gatherings that include kids. Um yah, because social isolation of anyone different is always a good answer. I think that has been tried a few times over the years. Most of humanity usually has a problem with it.
Look, I get that including Bambam is not always easy. He's big, and noisy, and physical, and can easily get disregulated and loose control of his body. Words often fail him so he uses actions. I get it more than anyone else, I live with him 24/7. I understand that we are asking a lot of our friends, and our friends kids to include him. I know that it takes a healthy amount of patience and understanding to to do so. And maybe we're asking to much, I don't know. But the answer is not excluding him. It just isn't.
Bambam loves other kids. He asks to play with kids every day. When we tell him we are going somewhere, his first comment is "Kids will be there? I play with kids?". He would never purposely hurt another child. There could be a number of reasons why he was throwing (although this part of the story is inconsistent between kids, some say he wasn't out of control at all) but it would never be with the intent of harm. And we've told all the other kids that if Bambam is struggling then they should come get me or Mr. Fixit. Its our job to monitor him. We are happy to stay in the same room with him when ever it is necessary. Or temporarily remove him from a situation that is getting overwhelming for him. There are many positive ways this could have been handled. And yet it wasn't.
So here I sit not really knowing what path to take. I'm mad and sad and disappointed and discouraged. Because if I can't ask my "friends" to offer the patience, understanding, and accommodations necessary to include Bambam, then how can I ever expect anyone else too? Sigh.
About a week ago, one of my "friends" approached me to discuss an incident that occurred at her house 2 months ago. We were at a gathering that included kids, about 8 total ranging in age from 7 to 13. As she told it, the kids were all in the room above the garage (with no adults present) when Bambam started throwing things. So one of the 13 year old girls thought it was a good idea to LOCK HIM THE BATHROOM. At that point, one of the other 13 year old girls tackled her in order to prevent that from happening (I love that child). As you can imagine, a whole fiasco ensued.
So my "friend" said that basically Bambam, wasn't welcome in her home anymore as he caused this incident. Um WHAT?!?! I have sooooo many issues with this I don't even know where to begin.
The most obvious issue is since when is the victim of a bullying incident the one to blame? And make no mistake this is a severe case of bullying. There is NEVER A REASON TO LOCK A 7 YEAR OLD SPECIAL NEEDS CHILD IN THE BATHROOM. Adults go to jail for that shit. YES, I'm mad.
I gave her this analogy: if there is a bullying incident at a school and another child stops the bully with violence, the school would never call the parent of the bullying victim and tell them he wasn't welcome at their school anymore as he caused the violence. It is ridiculous. Not to mention that in this case the victim is a 7 year old, with significant developmental delays. And the other kids are 13. Really? Your going to blame the weakest link? The one who has no way to defend himself? I am so disappointed.
She then suggested that we get a sitter and leave Bambam at home whenever we have gatherings that include kids. Um yah, because social isolation of anyone different is always a good answer. I think that has been tried a few times over the years. Most of humanity usually has a problem with it.
Look, I get that including Bambam is not always easy. He's big, and noisy, and physical, and can easily get disregulated and loose control of his body. Words often fail him so he uses actions. I get it more than anyone else, I live with him 24/7. I understand that we are asking a lot of our friends, and our friends kids to include him. I know that it takes a healthy amount of patience and understanding to to do so. And maybe we're asking to much, I don't know. But the answer is not excluding him. It just isn't.
Bambam loves other kids. He asks to play with kids every day. When we tell him we are going somewhere, his first comment is "Kids will be there? I play with kids?". He would never purposely hurt another child. There could be a number of reasons why he was throwing (although this part of the story is inconsistent between kids, some say he wasn't out of control at all) but it would never be with the intent of harm. And we've told all the other kids that if Bambam is struggling then they should come get me or Mr. Fixit. Its our job to monitor him. We are happy to stay in the same room with him when ever it is necessary. Or temporarily remove him from a situation that is getting overwhelming for him. There are many positive ways this could have been handled. And yet it wasn't.
So here I sit not really knowing what path to take. I'm mad and sad and disappointed and discouraged. Because if I can't ask my "friends" to offer the patience, understanding, and accommodations necessary to include Bambam, then how can I ever expect anyone else too? Sigh.
Thursday, September 26, 2013
Curriculum Night
I went to Bambam's curriculum night last night. It is the last curriculum night I will ever attend.
Although on the severe end of the autism spectrum, Bambam attends our local neighborhood grade school where he is assigned to a typical 2nd grade classroom. It is his home room, where he starts and ends the day (when he's having a good day). It is where he attends (most) of the specials, ie: PE, music, art, library (again when he's having a good day). I applaud his school for their dedication to inclusion, we are so grateful for the community of acceptance they have created.
But in all honesty, Bambam spends at least 75% of his day with one of his aides in the learning resource center getting specialized instruction. Because while the other kids in his class are reading in groups, writing in their journals, or doing math worksheets; my son is learning to count to 20, the sounds of the letters, and how to write his name. That is, when they can get him to sit and focus for at least 5 minutes at a time.
Most days I'm good with this. Fact is, we've long since been down the 5 stages of grief road and have firmly landed on acceptance. We've accepted that Bambam is on his own time schedule, he will learn at his own pace. And he does continue to learn and we celebrate each and every one of his small victories.
But, that doesn't mean that there are no longer times when I have a small pity party. And as I sat in that curriculum night listening to his classroom teacher talk about the children leaning to borrow and carry over in their math skills and showed parents their writing journals, I was sitting there hoping that Bambam was having a productive pooping time for daddy so he could wear underwear to school the next day. And it hit me smack in the face yet again. Just how far the gap is between him and his typically developing peers. And it sucks. Sometimes it just sucks.
I cried all the way home. I was a mess the rest of the evening. I was grieving all over again. And really, I don't need that. It doesn't help anyone, least of all Bambam. And isn't that who this is all about?
So I decided I will not attend any more curriculum nights. And if a teacher or other parent thinks I'm "that" parent that doesn't show up or isn't involved, they will simply be wrong. What I am is "that" parent who will focus on what is right for her child.
Although on the severe end of the autism spectrum, Bambam attends our local neighborhood grade school where he is assigned to a typical 2nd grade classroom. It is his home room, where he starts and ends the day (when he's having a good day). It is where he attends (most) of the specials, ie: PE, music, art, library (again when he's having a good day). I applaud his school for their dedication to inclusion, we are so grateful for the community of acceptance they have created.
But in all honesty, Bambam spends at least 75% of his day with one of his aides in the learning resource center getting specialized instruction. Because while the other kids in his class are reading in groups, writing in their journals, or doing math worksheets; my son is learning to count to 20, the sounds of the letters, and how to write his name. That is, when they can get him to sit and focus for at least 5 minutes at a time.
Most days I'm good with this. Fact is, we've long since been down the 5 stages of grief road and have firmly landed on acceptance. We've accepted that Bambam is on his own time schedule, he will learn at his own pace. And he does continue to learn and we celebrate each and every one of his small victories.
But, that doesn't mean that there are no longer times when I have a small pity party. And as I sat in that curriculum night listening to his classroom teacher talk about the children leaning to borrow and carry over in their math skills and showed parents their writing journals, I was sitting there hoping that Bambam was having a productive pooping time for daddy so he could wear underwear to school the next day. And it hit me smack in the face yet again. Just how far the gap is between him and his typically developing peers. And it sucks. Sometimes it just sucks.
I cried all the way home. I was a mess the rest of the evening. I was grieving all over again. And really, I don't need that. It doesn't help anyone, least of all Bambam. And isn't that who this is all about?
So I decided I will not attend any more curriculum nights. And if a teacher or other parent thinks I'm "that" parent that doesn't show up or isn't involved, they will simply be wrong. What I am is "that" parent who will focus on what is right for her child.
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