Monday, February 13, 2012
They Like Me! They Really Like Me!
I was nominated for funniest blog post for my Sensory/Superhero post on the SPD Blogger Network. Go and vote :) Thank you!
Thursday, February 02, 2012
Wednesday, February 01, 2012
Keep your special needs kids at home!
That basically what I was told on a message board (waves to the cammers if they are still coming over) when I had posted about the use of restraint and seclusion. "If your kids can't behave - keep them at home! I don't want them interfering with my child's education!". One went on to tell me that a child with special needs was allowed to throw heavy objects around the classroom without any discipline or consequence. That the child was there a good portion of the year and it had to be escalated to the principal to have the child removed. My response was shame on you for not advocating for your child. Advocating is not just something the special needs community needs to do (though we usually need to do it a hell of a lot more).
I tried to appeal to them by asking "what would you do if your child was locked into a room for hours, allowed to urinate or defecate on themselves?" The response was essentially (paraphrasing here) that the kid would be in trouble for whatever caused them to be put into that room in in the first place. ~insert jaw drop here~. Now, I know kids can be bad. Hell, I was a handful myself. But there is no reason for a child to be locked away for hours on end. They just couldn't understand that.
I was told that if anything, they would oppose this law because it ties the hands of the teachers. ~sigh~ They obviously didn't read the act. While there are some issues that teachers have pointed out to me (not allowed to restrain a child when trying to flee the premises), the idea is not to completely stop the use of restraint and seclusion but to prevent the abuse of these tools.
When I tried to explain that the difference between their child and my child being restrained and/or secluded was that their child had the ability to come home and tell the parents exactly what happened vs. my son (and many other special needs children) who couldn't articulate the experience, they didn't want to hear it. Our kids are different because they can't defend themselves and can't tell. That's what I thought until I read this story about the Los Angeles teacher who tied up his 3rd grade students, taped their eyes and mouths shut, put giant cockroaches on their faces and fed them semen. As far as I can tell, these are neurotypical children. These children didn't tell. The only reason he was found out is because he was photographing it and having it developed. The clerk at the store reporting the photos to the police (bless him!). They set up surveillance in the classroom and he was caught.
These issues are not special needs vs. neurotypical. We all need to take notice. We need to do everything we can to protect our kids.
I tried to appeal to them by asking "what would you do if your child was locked into a room for hours, allowed to urinate or defecate on themselves?" The response was essentially (paraphrasing here) that the kid would be in trouble for whatever caused them to be put into that room in in the first place. ~insert jaw drop here~. Now, I know kids can be bad. Hell, I was a handful myself. But there is no reason for a child to be locked away for hours on end. They just couldn't understand that.
I was told that if anything, they would oppose this law because it ties the hands of the teachers. ~sigh~ They obviously didn't read the act. While there are some issues that teachers have pointed out to me (not allowed to restrain a child when trying to flee the premises), the idea is not to completely stop the use of restraint and seclusion but to prevent the abuse of these tools.
When I tried to explain that the difference between their child and my child being restrained and/or secluded was that their child had the ability to come home and tell the parents exactly what happened vs. my son (and many other special needs children) who couldn't articulate the experience, they didn't want to hear it. Our kids are different because they can't defend themselves and can't tell. That's what I thought until I read this story about the Los Angeles teacher who tied up his 3rd grade students, taped their eyes and mouths shut, put giant cockroaches on their faces and fed them semen. As far as I can tell, these are neurotypical children. These children didn't tell. The only reason he was found out is because he was photographing it and having it developed. The clerk at the store reporting the photos to the police (bless him!). They set up surveillance in the classroom and he was caught.
These issues are not special needs vs. neurotypical. We all need to take notice. We need to do everything we can to protect our kids.
Friday, January 27, 2012
ACTION ALERT on Restraint and Seclusion*
PLEASE EMAIL YOUR UNITED STATES SENATORS AND ASK THEM TO COSPONSOR THE KEEPING ALL STUDENTS SAFE ACT (S.2020). This bill will protect children with disabilities nationwide from restraint, seclusion and aversive practices used in the public school system.
The need for this legislation is exemplified yet again in a horrific a situation regarding the use of school seclusion rooms, this time in Middletown, CT – See one of many stories on this situation here http://www.wfsb.com/story/16490795/middletown
How to Contact your U.S. Senator http://www.senate.gov/general/contact_information/senators_cfm.cfm
*reposted with permission
The need for this legislation is exemplified yet again in a horrific a situation regarding the use of school seclusion rooms, this time in Middletown, CT – See one of many stories on this situation here http://www.wfsb.com/story/16490795/middletown
How to Contact your U.S. Senator http://www.senate.gov/general/contact_information/senators_cfm.cfm
*reposted with permission
Wednesday, January 18, 2012
Another child, another injury from restraint
Please sign this Petition to support the end of restraint and seclusion in Florida schools.
We will tackle this state by state if we have to but this needs to end. I will warn you... the video posted is graphic and heartbreaking. My heart goes out to this mother!
We will tackle this state by state if we have to but this needs to end. I will warn you... the video posted is graphic and heartbreaking. My heart goes out to this mother!
Friday, January 13, 2012
"Scream Room"?? Sounds more like torture room to me.
A school in Connecticut is under fire for having and using what they refer to as a "Scream Room". They are used when a teacher has lost control of a child's behavior and is used as a seclusion room. They are supposed to be padded for the child's protection. This room is not.
Children as young as 5 are allegedly subjected to this room on a regular basis. Their screams heard by the other children. There are claims that the teachers will hold the door closed on the child to keep them inside. How the hell do these people sleep at night????
I read the comments at the bottom of the article and I wish I could say I'm surprised. I'd love to take out a full page ad in USA today or some other national magazine or newspaper to let the world know that most parents of special needs kids do parent and discipline our children! We do NOT expects the schools to raise our children for us. That often times children are being overly disciplined for either (a) typical, age appropriate behaviors or (b) for behaviors that are caused by neurological responses to their environment.
Would you expert a child who had a seizure to be disciplined for their behavior? If not, then why should a child who is verbally or physically stimming (hooting, yelling, humming, spinning, rolling on the floor) be punished?
My son is a major stim monkey. His OT once told me if she could hook up an IV of stimulation to him.... Anyway, one of his stim behaviors last year was, at the end of the day, when he was tired and overstimulated, he'd lay on the tile floor and push his face onto the tile. If this was happening in the classroom, it would have not been a big deal. However, he tended to do this during dismissal in the middle of the hallway when students are trying to get to their buses. He posed a hazard to himself and those children. His teachers didnt' restrain him or seclude him for a behavior that he really couldn't control. They did what they had to do to keep him safe until we were able to come up with a solution to the challenge. We found that if he was given sensory stimulation prior to dismissal, it would hold him long enough to get him and his classmates on their buses safely.
I'd love to see action plans for every student - not just special needs. I'd love to see all teachers setting their students up for success. As Dylan's teacher, Miss Joan, says over and over again... "If you set children up for success, they will succeed. If you set them up for failure, they will fail".
Scream rooms or restraint and seclusion rooms that are used at the drop of a hat is a great way to set up students for failure. These techniques should be used as a last resort, when an escalation plan has been put into place but does not prevent a child from going into melt down. Children should not be left alone in a locked room, frightened to the point of harming themselves. They should be monitored as closely as possible. These rooms should have cameras to prevent the abuse of students AND school staff.
People, this isn't rocket science.
Children as young as 5 are allegedly subjected to this room on a regular basis. Their screams heard by the other children. There are claims that the teachers will hold the door closed on the child to keep them inside. How the hell do these people sleep at night????
I read the comments at the bottom of the article and I wish I could say I'm surprised. I'd love to take out a full page ad in USA today or some other national magazine or newspaper to let the world know that most parents of special needs kids do parent and discipline our children! We do NOT expects the schools to raise our children for us. That often times children are being overly disciplined for either (a) typical, age appropriate behaviors or (b) for behaviors that are caused by neurological responses to their environment.
Would you expert a child who had a seizure to be disciplined for their behavior? If not, then why should a child who is verbally or physically stimming (hooting, yelling, humming, spinning, rolling on the floor) be punished?
My son is a major stim monkey. His OT once told me if she could hook up an IV of stimulation to him.... Anyway, one of his stim behaviors last year was, at the end of the day, when he was tired and overstimulated, he'd lay on the tile floor and push his face onto the tile. If this was happening in the classroom, it would have not been a big deal. However, he tended to do this during dismissal in the middle of the hallway when students are trying to get to their buses. He posed a hazard to himself and those children. His teachers didnt' restrain him or seclude him for a behavior that he really couldn't control. They did what they had to do to keep him safe until we were able to come up with a solution to the challenge. We found that if he was given sensory stimulation prior to dismissal, it would hold him long enough to get him and his classmates on their buses safely.
I'd love to see action plans for every student - not just special needs. I'd love to see all teachers setting their students up for success. As Dylan's teacher, Miss Joan, says over and over again... "If you set children up for success, they will succeed. If you set them up for failure, they will fail".
Scream rooms or restraint and seclusion rooms that are used at the drop of a hat is a great way to set up students for failure. These techniques should be used as a last resort, when an escalation plan has been put into place but does not prevent a child from going into melt down. Children should not be left alone in a locked room, frightened to the point of harming themselves. They should be monitored as closely as possible. These rooms should have cameras to prevent the abuse of students AND school staff.
People, this isn't rocket science.
Friday, January 06, 2012
Keeping All Student Safe Act - An Open Letter
Over the years, I have learned about the use of restraint and seclusion being used as a disciplinary tool in our schools. For some children, it has meant severe mental anguish after being locked in a closet during school hours or, in a recent case, forced into a duffel bag, zipped into it until his mother could get to the school and free him. For other children, the use of restraint has resulted in injuries from being duct taped or tied into chairs. Some schools have specially made restraint chairs! The use of restraint has led to some children's death.
While these disciplinary actions happens across the board with all children, it is an area of extreme concern in the special needs community. Children, young adults and adults within special needs community can easily victimized by teachers, aids and may not be able to communicate what is happening to their parents and/or caregivers.
My son Dylan, unfortunately, experienced being restrained this summer. He has a one-on-one advocate (she's worked with him for the past two years, is the parent of a special needs child herself, handles Dylan wonderfully and he adores her). He was angry at her because she wasn't letting him have his way. He was flapping his arms, telling her he was mad at her and he was going to walk away. Now, this is typical of Dylan when he gets angry and we have all worked hard to teach him that sometimes you just need to take yourself out of a frustrating situation and regroup. His Advocate knew this, was comfortable with this and had numerous situations where he responded this way and they worked through things in about 5-10 minutes. However, this particular day she was being shadowed by her supervisor who decided that my 3'11" tall, 47 pound son posed a physical threat to his advocate and physically restrained him, bruising his wrists in the process. I was furious. We had no legal recourse against this woman. There are no laws currently to protect our children. As I type this, she's teaching pre-school for special needs children. While we didn't expect her to lose her regular job, there is no database to track this behavior. We were lucky - the bruise and the memory faded quickly for him... but not for me.
Restraint can be necessary. It's important that the teachers and other caregivers have the means to protect the students, themselves and anyone else who may be in the middle of a situation. However, people have gone overboard. People have needlessly died.
US Senator Tom Harkin (D-IA) who crafted the American With Disabilities Act, has introduced the S. 2020: Keeping All Students Safe Act. For a fantastic outline of what this Act will hopefully achieve, please see a post by Jessica Butler who is the Congressional Affairs Coordinator for the National Autism Committee at OUR Journey Through Autism.
Please, if you have taken the time to read this, please take a few extra minutes and read the legislation and support it. Email Jessica at jessica@jnba.net to share your support. If you have a story to share about seclusion and/or restraint, she'd love to hear them. If you don't, your support is enough. Contact your local senators and let them know that you want their support on this important piece of legislation.
Thank you for your time!
While these disciplinary actions happens across the board with all children, it is an area of extreme concern in the special needs community. Children, young adults and adults within special needs community can easily victimized by teachers, aids and may not be able to communicate what is happening to their parents and/or caregivers.
My son Dylan, unfortunately, experienced being restrained this summer. He has a one-on-one advocate (she's worked with him for the past two years, is the parent of a special needs child herself, handles Dylan wonderfully and he adores her). He was angry at her because she wasn't letting him have his way. He was flapping his arms, telling her he was mad at her and he was going to walk away. Now, this is typical of Dylan when he gets angry and we have all worked hard to teach him that sometimes you just need to take yourself out of a frustrating situation and regroup. His Advocate knew this, was comfortable with this and had numerous situations where he responded this way and they worked through things in about 5-10 minutes. However, this particular day she was being shadowed by her supervisor who decided that my 3'11" tall, 47 pound son posed a physical threat to his advocate and physically restrained him, bruising his wrists in the process. I was furious. We had no legal recourse against this woman. There are no laws currently to protect our children. As I type this, she's teaching pre-school for special needs children. While we didn't expect her to lose her regular job, there is no database to track this behavior. We were lucky - the bruise and the memory faded quickly for him... but not for me.
Restraint can be necessary. It's important that the teachers and other caregivers have the means to protect the students, themselves and anyone else who may be in the middle of a situation. However, people have gone overboard. People have needlessly died.
US Senator Tom Harkin (D-IA) who crafted the American With Disabilities Act, has introduced the S. 2020: Keeping All Students Safe Act. For a fantastic outline of what this Act will hopefully achieve, please see a post by Jessica Butler who is the Congressional Affairs Coordinator for the National Autism Committee at OUR Journey Through Autism.
Please, if you have taken the time to read this, please take a few extra minutes and read the legislation and support it. Email Jessica at jessica@jnba.net to share your support. If you have a story to share about seclusion and/or restraint, she'd love to hear them. If you don't, your support is enough. Contact your local senators and let them know that you want their support on this important piece of legislation.
Thank you for your time!
Tuesday, January 03, 2012
Too Important Not To Share!
How do you feel about the use of seclusion and restraint in your child's schools? Were you aware that your child's teacher and physically restrain your child, lock them in a closet or other room and face no legal action?
This summer, Dylan was injured (slightly) when someone unnecessarily restrained him. We had no legal recourse against her. Keeping All Students Safe Act, S.2020 will change that!
Please see this post over at OUR Journey Thru Autism and let Jessica know your thoughts on the matter. Even if you don't have a story to share, if you support this bill (how could you not?), please email Jessica and spread the word!
This summer, Dylan was injured (slightly) when someone unnecessarily restrained him. We had no legal recourse against her. Keeping All Students Safe Act, S.2020 will change that!
Please see this post over at OUR Journey Thru Autism and let Jessica know your thoughts on the matter. Even if you don't have a story to share, if you support this bill (how could you not?), please email Jessica and spread the word!
Tuesday, December 13, 2011
Is that you?
Every so often, I see a hit from Australia. Is that you Kim? If so, come out, say hi, leave your email so I can say hi back :)
Friday, December 09, 2011
Tuesday, December 06, 2011
Note from the teacher....
I got an email from Dylan's tutor today.
"When I went into gaga to pick him up, Natalie told me that they kissed on the lips. She told me they are getting married. I told them that they can't get married until they are 18 and they can't kiss. I told Dylan he could only kiss family members.
Thought you might want to know."
Oh boy. And so it begins!
"When I went into gaga to pick him up, Natalie told me that they kissed on the lips. She told me they are getting married. I told them that they can't get married until they are 18 and they can't kiss. I told Dylan he could only kiss family members.
Thought you might want to know."
Oh boy. And so it begins!
Monday, December 05, 2011
That's My Boy! He's Really Gets It!
Yesterday, we were running errands and it was clear that Dylan was just about at the end of his rope. Instead of pushing the issue, I told Marc that I'd drop him and Dylan at the park and I'd go do the grocery/veggie shopping and pick them up after. I ran to the produce store and the grocery store and called him to let him know I was on my way.
They got into the car and Marc looked like he was ready to kill someone. A boy at the playground had a set of binoculars. Dylan, who loves binoculars, telescopes and the like, asked to play with them. The boy not only didn't let him play with them but taunted him with them. As if that weren't bad enough, the little jerk then proceeded to try to turn the other children in the playground against Dylan. The boy's older brother did his best to intervene but the kid's father just sat there on the bench like an ineffective asshole. He did eventually take away the binoculars but never corrected the child's behavior.
I'm so proud of the two of them. First, my husband for not punching the father in the throat and not telling Dylan to drop kick this guy's offspring into tomorrow. Secondly for Dylan holding it together and not getting upset. Sorry you little fucker, you didn't get the best of my boy.
Later, after the groceries were put away, Marc and Dylan went out to tackle what was left of the leaves. We have a decent sized pile in front of the house. I glanced out the window to see Dylan with two little girls from across the street. It was the first time he's had a chance to play with them (I believe they are only with their Dad part time). I watched as he showed them his new toy (that he earned for good behavior - this claw grabbing kinda thing). He picked up some leaves with it and threw them into the air. The girls laughed under the shower of leaves. He then turned to the younger girl, taking a moment to show her how it works, and then gave it to her. I'm not even sure if she asked to play with it, he just handed it over. He let her play with it for some time and then he took it from her and gave it to her big sister. I went out, introduced myself to the girls and then told Dylan I liked the way he was playing and went back inside knowing there would be no cries of "he's not sharing" or "she's being mean". Just three kids playing nicely in the leaves.
When they finally came in I just gave him a big hug. He smelled like leaves.
They got into the car and Marc looked like he was ready to kill someone. A boy at the playground had a set of binoculars. Dylan, who loves binoculars, telescopes and the like, asked to play with them. The boy not only didn't let him play with them but taunted him with them. As if that weren't bad enough, the little jerk then proceeded to try to turn the other children in the playground against Dylan. The boy's older brother did his best to intervene but the kid's father just sat there on the bench like an ineffective asshole. He did eventually take away the binoculars but never corrected the child's behavior.
I'm so proud of the two of them. First, my husband for not punching the father in the throat and not telling Dylan to drop kick this guy's offspring into tomorrow. Secondly for Dylan holding it together and not getting upset. Sorry you little fucker, you didn't get the best of my boy.
Later, after the groceries were put away, Marc and Dylan went out to tackle what was left of the leaves. We have a decent sized pile in front of the house. I glanced out the window to see Dylan with two little girls from across the street. It was the first time he's had a chance to play with them (I believe they are only with their Dad part time). I watched as he showed them his new toy (that he earned for good behavior - this claw grabbing kinda thing). He picked up some leaves with it and threw them into the air. The girls laughed under the shower of leaves. He then turned to the younger girl, taking a moment to show her how it works, and then gave it to her. I'm not even sure if she asked to play with it, he just handed it over. He let her play with it for some time and then he took it from her and gave it to her big sister. I went out, introduced myself to the girls and then told Dylan I liked the way he was playing and went back inside knowing there would be no cries of "he's not sharing" or "she's being mean". Just three kids playing nicely in the leaves.
When they finally came in I just gave him a big hug. He smelled like leaves.
Wednesday, November 30, 2011
It was scary....
Last week, Dylan's tutor sent us a video of Dylan working. She always does this for the parents of the children she works with to show us all the magical things our children are learning. On Tuesday, she worked with him and show the video and he did this weird head/eye roll thing. I chalked it up to his being silly.
Then, after his work with his tutor, he went to go play. His day care has this two story play area (think a McDonald's type playland only mesh). He proceeded to have an epic, earth shattering meltdown. He latched onto a pole and had to be pried off (all the while hysterical crying). He then laid down and refused to move. Just crying for Mommy and not saying what had happened. I got there about 15 minutes into it and had to crawl into the structure to get him. Ordinarily, he would have acknowledged me but he didn't. I pulled him onto my chest and he was dead weight. Just crying and mumbling. After another 15 minutes or so, he was calm and we climbed down. We went home, had dinner and I put him to bed. I sat in our living room and my brain went into overdrive. Something was off with him. His energy was off. He wasn't acting like himself. I spoke with the tutor and she agreed, something wasn't right. We called the doctor. The next morning we went to the pediatrician (new one who we adore). He thought it may have been a seizure so now we have to get into see the neurologist. The one he reommended wasn't available till January 25th. The one we saw years ago at the children's hospital wasn't available either but his nurse had him call us. I showed him the video. It wasn't a seizure - more than likely some self-stim behavior.
What happened in the play area? Well, that could have been a seizure of some sort but "we don't chase one seizure". He said that it's not like we can put him on meds for seizures without proof that he had a seizure. When he had his seizures as a baby, his EEG was normal. So chances are, if he's following the same pattern, he'll have a normal EEG and medication wouldn't be warranted. Plus, if it's one seizure, how do measure if the medication is working. Dylan's seizures as a baby were uncontrolled. 5 tonic clonic seizures in a day. That's why they put him on medication.
Hopefully, this was just a scare and nothing more. Good news is that he can start his new ADHD medication. The first one ended up giving him stomach aches, aggression and he was picking his fingers raw. Hopefully this one will do the same for his attention without the side effects.
Then, after his work with his tutor, he went to go play. His day care has this two story play area (think a McDonald's type playland only mesh). He proceeded to have an epic, earth shattering meltdown. He latched onto a pole and had to be pried off (all the while hysterical crying). He then laid down and refused to move. Just crying for Mommy and not saying what had happened. I got there about 15 minutes into it and had to crawl into the structure to get him. Ordinarily, he would have acknowledged me but he didn't. I pulled him onto my chest and he was dead weight. Just crying and mumbling. After another 15 minutes or so, he was calm and we climbed down. We went home, had dinner and I put him to bed. I sat in our living room and my brain went into overdrive. Something was off with him. His energy was off. He wasn't acting like himself. I spoke with the tutor and she agreed, something wasn't right. We called the doctor. The next morning we went to the pediatrician (new one who we adore). He thought it may have been a seizure so now we have to get into see the neurologist. The one he reommended wasn't available till January 25th. The one we saw years ago at the children's hospital wasn't available either but his nurse had him call us. I showed him the video. It wasn't a seizure - more than likely some self-stim behavior.
What happened in the play area? Well, that could have been a seizure of some sort but "we don't chase one seizure". He said that it's not like we can put him on meds for seizures without proof that he had a seizure. When he had his seizures as a baby, his EEG was normal. So chances are, if he's following the same pattern, he'll have a normal EEG and medication wouldn't be warranted. Plus, if it's one seizure, how do measure if the medication is working. Dylan's seizures as a baby were uncontrolled. 5 tonic clonic seizures in a day. That's why they put him on medication.
Hopefully, this was just a scare and nothing more. Good news is that he can start his new ADHD medication. The first one ended up giving him stomach aches, aggression and he was picking his fingers raw. Hopefully this one will do the same for his attention without the side effects.
Monday, November 14, 2011
What a difference almost a year makes!
About a year ago, Dylan won a box of figits from the lovely http://www.ourjourneythruautism.com/. I had used this as a teaching moment and Dylan wrote her a thank you note....
Recently, Dylan rode in a fund raiser for his stable. I asked him to write a thank you note and this is what he did....
It's amazing what time and hard work will do.
Recently, Dylan rode in a fund raiser for his stable. I asked him to write a thank you note and this is what he did....
Thursday, November 03, 2011
School
Dylan has really been enjoying school this year. The medication has improved his attention span which is allowing him to learn at a much greater pace. He's starting to read (he currently loves to point out the word "the") and it's just such an exciting time for us all. His teacher uses this great website called Star Fall. He enjoys it so much that he'd rather work on his reading than watch TV (Score!).
He really needed a dedicated workstation in the house. We had one set up from last year but he really has outgrown it. We have a recliner in our living room which we never use (other than to dump our coats on) so we moved that into the attic and went to Ikea and picked up a small desk for $20. We got him a chair (that swivels so if vestibular stimulation is needed, we can just spin him around in the chair - wheeeeee) and a little foot rest. The desk is perfect because it has a gully on the back that holds a pencil holder and other small items which allows his work space to be free of distractions. We did need to put a small desk lamp on there because the lighting in our living room stinks. He does mess with that a bit so we may have to find an alternative.
The other day, he wanted to work on his letters on Star Fall so I put the laptop on his desk and he just worked away. He's gotten so good at the computer it just blows my mind. In his classroom, they have a huge smart board that they use for Star Fall (among other things). It's funny when Dylan forgets and tries to use the screen on the laptop as a touch screen.
Friday we saw our developmental pediatrician. He was thrilled at how well Dylan is doing on his medication and was very pleasantly surprised that there have been no side effects. He's eating and sleeping well and has exhibited no tics.
Monday I took a half day and went to his Halloween parade and volunteered in the classroom for the party. Fifteen minutes before the parade was to begin, we started to get the kids ready. Each child was taken to the bathroom and then brought back into the room to get dressed in their costume. About 5 minutes before the parade was to begin the fire alarm went off. We lined up the kids and led them outside (our poor sensory seeker with their hands over their ears did great). They lined up in their designated spot, the teacher did a confirming head count and asked the children to sit on the ground, cross legged as "model students" (when she asks them to do this, they know to be quite and place their hands in their laps). They waited. From time to time, we got whiffs of smoke. Turns out someone put a box on top of an oven which was on. It was a small fire that the staff took care of but required the fire department to come out anyway.
After a while, the older kids got restless, stood up, started taking photos of each other, laughing and horsing around. Their teachers tried to get them to sit back down and be quiet but it was like hurding cats. This whole time, Dylan and his classmates just sat on the ground, looking around quietly with their hands in their laps. I said to his teacher "you must be ready to burst!" She asked me why and I pointed at the class and said "look at how good they are being, all the older kids are misbehaving but here they are, our model students, this is all you and your staff's hard work. You must be so proud!" She was and make sure the kids knew it.
We had our parade and went back into the school and had our party. His teacher picked up dye free cupcakes at Whole Paycheck (LOL) and we had chips and fresh fruit and juice. It was lovely. We left and went home and relaxed for a bit and then went out trick-or-treating. We ran into our neighbor and hung out with her and her two kids. It was fun. She pulled along a wagon complete with a cooler full of beer. Kids got their treats and we got ours ;)
He really needed a dedicated workstation in the house. We had one set up from last year but he really has outgrown it. We have a recliner in our living room which we never use (other than to dump our coats on) so we moved that into the attic and went to Ikea and picked up a small desk for $20. We got him a chair (that swivels so if vestibular stimulation is needed, we can just spin him around in the chair - wheeeeee) and a little foot rest. The desk is perfect because it has a gully on the back that holds a pencil holder and other small items which allows his work space to be free of distractions. We did need to put a small desk lamp on there because the lighting in our living room stinks. He does mess with that a bit so we may have to find an alternative.
The other day, he wanted to work on his letters on Star Fall so I put the laptop on his desk and he just worked away. He's gotten so good at the computer it just blows my mind. In his classroom, they have a huge smart board that they use for Star Fall (among other things). It's funny when Dylan forgets and tries to use the screen on the laptop as a touch screen.
Friday we saw our developmental pediatrician. He was thrilled at how well Dylan is doing on his medication and was very pleasantly surprised that there have been no side effects. He's eating and sleeping well and has exhibited no tics.
Monday I took a half day and went to his Halloween parade and volunteered in the classroom for the party. Fifteen minutes before the parade was to begin, we started to get the kids ready. Each child was taken to the bathroom and then brought back into the room to get dressed in their costume. About 5 minutes before the parade was to begin the fire alarm went off. We lined up the kids and led them outside (our poor sensory seeker with their hands over their ears did great). They lined up in their designated spot, the teacher did a confirming head count and asked the children to sit on the ground, cross legged as "model students" (when she asks them to do this, they know to be quite and place their hands in their laps). They waited. From time to time, we got whiffs of smoke. Turns out someone put a box on top of an oven which was on. It was a small fire that the staff took care of but required the fire department to come out anyway.
After a while, the older kids got restless, stood up, started taking photos of each other, laughing and horsing around. Their teachers tried to get them to sit back down and be quiet but it was like hurding cats. This whole time, Dylan and his classmates just sat on the ground, looking around quietly with their hands in their laps. I said to his teacher "you must be ready to burst!" She asked me why and I pointed at the class and said "look at how good they are being, all the older kids are misbehaving but here they are, our model students, this is all you and your staff's hard work. You must be so proud!" She was and make sure the kids knew it.
We had our parade and went back into the school and had our party. His teacher picked up dye free cupcakes at Whole Paycheck (LOL) and we had chips and fresh fruit and juice. It was lovely. We left and went home and relaxed for a bit and then went out trick-or-treating. We ran into our neighbor and hung out with her and her two kids. It was fun. She pulled along a wagon complete with a cooler full of beer. Kids got their treats and we got ours ;)
Monday, October 17, 2011
Unexpected Effects of Therapeutic Riding (Hippotherapy)
When we were told that Dylan has low muscle tone, I did some research. I wanted to do something fun with him that would help the tone and that's when I discovered therapeutic riding. I went to the Professional Associates of Therapeutic Horsemanship International and found what was to be our new home.
The first time we went out, the owner K, introduced Dylan to her miniature pony. This is a good way for her to see how a child reacts to the animal and whether or not they would be a good candidate for therapeutic riding. She immediately showed me that helicoptering was NOT welcome in her stable and I really had to reign (pun intended) myself in. Dylan's love of animals overtook his shyness and he started riding a few weeks later.
He showed himself early on to be quite the horseman. He progressed from a beginner horse, to the next level to the youngest and feistiest of the horses. We've been told on several occassions that he has a "natural seat". Meaning that he is a nature rider which is interesting since one of his birth names means "Cowboy".
He loves to ride. He loves his horse B. Even though the work makes him sore sometimes, he just loves it. He has struggled to maintain his attention while on the horse but since we've introduced the medications, it's made a world of difference. The owner, K, has done Dylan's therapy the past few weeks while his therapist was on vacation. She was blown away by the change in his attention span the medications made.
This weekend was a fund raiser for the stable. Dylan (with our help) raised $150 for the stable and $100 in an ad sale. He understands that the money will help feed "his" horse and keep him warm in the winter. At the fund raiser - all the children riders and groomers (they have a grooming program for people who can't ride) demonstrated their abilities. Dylan rode through 10 stations and was at the top of his game. I was so proud I thought I'd burst. Then, at the end of the ride, they annouced that Dylan was working hard with his horse, B, and that he's working on improving his attention. Then they gave him a trophy, a ribbon and a certificate.
Oh wow. A trophy. If he could have slept with it, he would! He held it all the way home telling us "I love my trophy!". We reminded him that he got the trophy because he earned it. He worked so very hard and we are very proud of him and his accomplishments. I'm surprised we didn't get pulled over from the light that must have been coming out of our car windows from him beaming! More important than his basking in the approval of his parents, he was basking in self approval. He was proud of himself. More than I've ever seen before. In addition to improving his gross and fine motor skills, improving his tone, he discovered accomplishment. He discovered pride and self worth. He discovered the rewards of a job well done.
Congrats to my little equestrian!
The first time we went out, the owner K, introduced Dylan to her miniature pony. This is a good way for her to see how a child reacts to the animal and whether or not they would be a good candidate for therapeutic riding. She immediately showed me that helicoptering was NOT welcome in her stable and I really had to reign (pun intended) myself in. Dylan's love of animals overtook his shyness and he started riding a few weeks later.
He showed himself early on to be quite the horseman. He progressed from a beginner horse, to the next level to the youngest and feistiest of the horses. We've been told on several occassions that he has a "natural seat". Meaning that he is a nature rider which is interesting since one of his birth names means "Cowboy".
He loves to ride. He loves his horse B. Even though the work makes him sore sometimes, he just loves it. He has struggled to maintain his attention while on the horse but since we've introduced the medications, it's made a world of difference. The owner, K, has done Dylan's therapy the past few weeks while his therapist was on vacation. She was blown away by the change in his attention span the medications made.
This weekend was a fund raiser for the stable. Dylan (with our help) raised $150 for the stable and $100 in an ad sale. He understands that the money will help feed "his" horse and keep him warm in the winter. At the fund raiser - all the children riders and groomers (they have a grooming program for people who can't ride) demonstrated their abilities. Dylan rode through 10 stations and was at the top of his game. I was so proud I thought I'd burst. Then, at the end of the ride, they annouced that Dylan was working hard with his horse, B, and that he's working on improving his attention. Then they gave him a trophy, a ribbon and a certificate.
Oh wow. A trophy. If he could have slept with it, he would! He held it all the way home telling us "I love my trophy!". We reminded him that he got the trophy because he earned it. He worked so very hard and we are very proud of him and his accomplishments. I'm surprised we didn't get pulled over from the light that must have been coming out of our car windows from him beaming! More important than his basking in the approval of his parents, he was basking in self approval. He was proud of himself. More than I've ever seen before. In addition to improving his gross and fine motor skills, improving his tone, he discovered accomplishment. He discovered pride and self worth. He discovered the rewards of a job well done.
Congrats to my little equestrian!
Friday, October 14, 2011
I'm Such A Slacker!
My dear friend Karen over at Solodialogue just reminded me that I haven't updated on Dylan since we put him on meds. All I can say is... wow. It's like the world has been on fast forward for him and giving him this medication put it on pause. He is noticing things in his environment like he's never seen them before, yet they were there since he was a baby. The content of his speech has been off the hook. He wants us to know what he's seeing and what he thinks about it. Not bad for a kid with a severe speech delay huh?
Initial reports from school have been incredible. He went from last year only having a good day occassionally to have great days and good days daily. His teacher is thrilled and thinks he'll be reading by December!
I've been told that we are terrible parents because we are drugging our kid. Fuck them.
Initial reports from school have been incredible. He went from last year only having a good day occassionally to have great days and good days daily. His teacher is thrilled and thinks he'll be reading by December!
I've been told that we are terrible parents because we are drugging our kid. Fuck them.
Thursday, September 29, 2011
Better Living Through Chemistry
Well, Dylan's been on the meds for almost 2 weeks now. After having a knock down, drag out battle with the insurance company and then his pediatrician (in which she called me up at 8:00 in the morning screaming at me), I got his meds covered.
It's been an interesting process. It's almost like the world has been on fast forward and by giving him this medication, we hit the pause button. He's seeing things in a new way and he's letting us know too. While the quality of his speech hasn't changed that much, the content has changed dramatically. He's instigating conversation so much more now, telling us about what he's noticing and what he's doing. He's received two certificates for good behavior (we've never had one before) and even the school nurse asked me if he was on meds. It definitely feels like we made the right decision.
It's been an interesting process. It's almost like the world has been on fast forward and by giving him this medication, we hit the pause button. He's seeing things in a new way and he's letting us know too. While the quality of his speech hasn't changed that much, the content has changed dramatically. He's instigating conversation so much more now, telling us about what he's noticing and what he's doing. He's received two certificates for good behavior (we've never had one before) and even the school nurse asked me if he was on meds. It definitely feels like we made the right decision.
Tuesday, September 20, 2011
Do Superheroes Have Sensory Processing Disorder??
A post on the SPD Blogger Website got me to thinking. I’ve always considered Dylan a superhero. Since he was a baby, I’ve said that his smile will change the world (one of his many super powers). On Beth’s post, I shared with her the one time I saw a child in sensory gear I told him he looked like a superhero which got me to thinking…..
Do superheroes have Sensory Processing Disorder????
Let’s explore shall we??
Spiderman wears a skin tight costume (compression garment) from head to toe. He flings himself off buildings, swinging back and forth through the air (vestibular stimulation). He wears his costume under his clothes and rips them off at the first sign of danger or a human in need (tactile defensiveness - tags and seams probably drive him nuts)
Superman also wears the skin tight costume (compression) and flies (vestibular) through the air with the greatest of ease. Now think about it – who other than someone with SPD would be remotely comfortable with flying without a plane or helicopter?
WAIT – THERE’S MORE!
I think we can all agree that the majority of superheroes wear compression type costumes which give sensory input.
Batman also has a utility belt and based on the number of gadgets (fidgets anyone?) I’d say that would be a weighted belt (sensory input).
Daredevil is blind but uses all his other senses to fight crime (just more support to my special needs = super powers theory).
Flash, Wonder Woman, Punisher, Storm, Thor, all wear compression suits, use heavy objects, seek vestibular input and, in some cases, in their alter egos, have proprioproceptive issues (hello clumsy Clark Kent!)
So the next time you see a child, teen or even adult wearing compression clothing, weighted garments or other “unusual” item, please don’t stare, don’t point fingers, don’t make faces. Please DO engage us and (if the parent seems receptive) or kids. Ask them what their super powers are! Chances are you’ll be able to figure it out on your own. Dylan’s smile and laugh, his ability to see good in everyone, his uncanny ability to make himself known in a very short period of time, those are his super powers. What are yours?
Friday, September 09, 2011
Starting meds
This weekend we are going to try meds on Dylan at the recommendation of the researchers in Boston. We are excited and terrified. We (Marc, myself and Dylan's developmental pediatrician) have put a great deal of thought and research into the medication. We needed something dye free (very hard to do), his doctor felt going the stimulant route was best and we all wanted something that was single dose. We also had to be conscious of the fact that Dylan has had seizures in the past so couldn't do something that may lower his seizure threshold (some drugs that are used off label for ADHD can lower the seizure threshold like W3llbutrin).
Tomorrow morning, after giving him a good hearty breakfast, we will open up a capsule of Metadate, sprinkle it in some pudding, give it to Dylan and wait and pray. I"m excited at the possibility of him being able to focus on something - anything. I'm terrified that it would trigger a seizure (though very unlikely, I'm still worried) and I'm even more terrified that it will take away his amazing personality. That's one side effect we are not willing to live with. Tics are another possibility but even though they can be unnerving, they will go away as the drug leaves his body.
We saw his behavioral therapist who basically told us that he hasn't seen much good done by the drug class we're trying and that stimulants are not a good idea for him. So, essentially, he's going against some of the top researchers and a doctor at the #1 children's hospital in the world (strike 1). He also suggested that Dylan would benefit more from a mood stabalizer like... w3llbutrin (strike 2). When I pointed out that wasn't an option he mentioned drugs like depakote (strike 3). WTF! Of course, I didn't sleep because now I was worried that we weren't doing this the right way. I called the developmental doc who basically said that he was way off base which is what our instincts were telling us. I'm thinking we may have outgrown our behavioral doc. He's helped us a great deal but our parenting has improved and we really can't afford to keep going to him ($160 an hour!). As my best friend pointed out, he has a vested interest in the drugs NOT working. We are going to play this one by ear.
Tomorrow morning, after giving him a good hearty breakfast, we will open up a capsule of Metadate, sprinkle it in some pudding, give it to Dylan and wait and pray. I"m excited at the possibility of him being able to focus on something - anything. I'm terrified that it would trigger a seizure (though very unlikely, I'm still worried) and I'm even more terrified that it will take away his amazing personality. That's one side effect we are not willing to live with. Tics are another possibility but even though they can be unnerving, they will go away as the drug leaves his body.
We saw his behavioral therapist who basically told us that he hasn't seen much good done by the drug class we're trying and that stimulants are not a good idea for him. So, essentially, he's going against some of the top researchers and a doctor at the #1 children's hospital in the world (strike 1). He also suggested that Dylan would benefit more from a mood stabalizer like... w3llbutrin (strike 2). When I pointed out that wasn't an option he mentioned drugs like depakote (strike 3). WTF! Of course, I didn't sleep because now I was worried that we weren't doing this the right way. I called the developmental doc who basically said that he was way off base which is what our instincts were telling us. I'm thinking we may have outgrown our behavioral doc. He's helped us a great deal but our parenting has improved and we really can't afford to keep going to him ($160 an hour!). As my best friend pointed out, he has a vested interest in the drugs NOT working. We are going to play this one by ear.
Thursday, August 18, 2011
Adventures in Genetics
Last week we went to Boston to participate in the Simons VIP Research program which is investigating the 16p11.2 deletion/duplication. Dylan has the deletion.
We left Wednesday after work, picked up Dylan and headed to the airport. Strangely enough, we flew through security (that never happens), got some dinner and waited for our flight. Our paperwork said Gate 6 but at about 15 minutes to take off, no one was at our gate. Marc double checked and yep, the gate had changed. We arrived just moments before they called our section. Dylan loved it! He is such a good traveler and flyer. He just looked out the window and once we were airborne, played with his video game. I love flying to Boston because you go up, level off, hang out for a few minutes and start your descent.
A driver picked us up and took us to the Sheraton where all the participants stay. We unpacked and jumped into bed and passed out. Next morning we got up early, found a place to eat and then took a taxi to the offices.
We spent a little time meeting everyone, going over the legal stuff and then we were off and running! I was in one room, being interviewed and video taped. Marc was in another room with a bunch of different questions and Dylan was in another room doing the ADOS Testing (autism testing) and other cognitive testing. His room had a one way mirror so during our interviews we could watch him. A few times I really wanted to go into the room and tell him to stop doing "x" but that's what they needed to see so I just kept doing my part. Oh, my part was a list of questions to help determine if he falls on the autism spectrum. Marc's questions were more general and family related.
We broke for lunch and came back to finish up the testing and questioning.
After, we headed back to the hotel. We went swimming in a salt water pool which was SOOOO cool. It's so nice not to smell like chlorine after swimming. Then we went to dinner at a nice little Italian place. It was an outdoor cafe and the birds were crazy aggressive which actually was a good thing because it entertained Dylan. Then back to the hotel where Dylan and I passed out and Marc went down to the lobby to read.
Next day, we went to Boston Children's Hospital where we had breakfast (they have a nice cafeteria) and they took 4 (yes 4) vials of blood. Dylan didn't so much as flinch. He's such a freaking rock star! Then we headed back to the office for a bit to discuss their findings* and then we headed to another hospital location for Dylan's MRI. They had a mock MRI for him to play with which was good. We called it a rocket ship and he got to play in it, on it, around it. Then we went up to do the real thing. It was scary but he did it. He hated every minute of it and said so. I don't blame him, I hate them too but when it was all said and done, they were able to do 1 series which is what they needed. That was it. We were done. We headed back to the hotel where we wandered around, let Dylan buy a toy and then met up with our friends Andy & Lori for dinner. After dinner went back to the hotel, got our driver, went to the airport and hopped our flight home. After we took off, Dylan wrapped his arms around my arm and put his head down and went to sleep. My arm is still sore :)
*Findings... Nothing new or earth shattering. However, we have a new understanding of things. The researcher who delivered the results has written papers on holistic medicine and children (she's pro). She also explained that she rarely gives out an ADHD diagnosis because she feels it's over diagnosed. However... Dylan is extremely ADHD and needs meds. We have an appointment at the end of September to discuss medicine with his physician. She also said he has movement disorder (flapping), sensory processing delay, the auditory processing stuff may or may not be caused by the ADHD- we'll be able to know more after he starts meds.
And in a case of right time, right place... she's an adoptee... in reunion! I told her that we were considering reaching out to Dylan's first mother to share these findings. She said that she is pretty confident that Dylan's deletion is pro novo (just one of those things that happen during development vs. hereditary). She also put it this way.... he's already struggling to understand the world around him. Bringing the first mother into the picture now may not be the right thing for Dylan. We should wait until he is able to really understand adoption, first mother, etc. So, after much discussions, we are going to wait. However, we may reach out to the attorney in Guatemala so that she can let her know. We're not sure about it just yet. Stay tuned ;)
We left Wednesday after work, picked up Dylan and headed to the airport. Strangely enough, we flew through security (that never happens), got some dinner and waited for our flight. Our paperwork said Gate 6 but at about 15 minutes to take off, no one was at our gate. Marc double checked and yep, the gate had changed. We arrived just moments before they called our section. Dylan loved it! He is such a good traveler and flyer. He just looked out the window and once we were airborne, played with his video game. I love flying to Boston because you go up, level off, hang out for a few minutes and start your descent.
A driver picked us up and took us to the Sheraton where all the participants stay. We unpacked and jumped into bed and passed out. Next morning we got up early, found a place to eat and then took a taxi to the offices.
We spent a little time meeting everyone, going over the legal stuff and then we were off and running! I was in one room, being interviewed and video taped. Marc was in another room with a bunch of different questions and Dylan was in another room doing the ADOS Testing (autism testing) and other cognitive testing. His room had a one way mirror so during our interviews we could watch him. A few times I really wanted to go into the room and tell him to stop doing "x" but that's what they needed to see so I just kept doing my part. Oh, my part was a list of questions to help determine if he falls on the autism spectrum. Marc's questions were more general and family related.
We broke for lunch and came back to finish up the testing and questioning.
After, we headed back to the hotel. We went swimming in a salt water pool which was SOOOO cool. It's so nice not to smell like chlorine after swimming. Then we went to dinner at a nice little Italian place. It was an outdoor cafe and the birds were crazy aggressive which actually was a good thing because it entertained Dylan. Then back to the hotel where Dylan and I passed out and Marc went down to the lobby to read.
Next day, we went to Boston Children's Hospital where we had breakfast (they have a nice cafeteria) and they took 4 (yes 4) vials of blood. Dylan didn't so much as flinch. He's such a freaking rock star! Then we headed back to the office for a bit to discuss their findings* and then we headed to another hospital location for Dylan's MRI. They had a mock MRI for him to play with which was good. We called it a rocket ship and he got to play in it, on it, around it. Then we went up to do the real thing. It was scary but he did it. He hated every minute of it and said so. I don't blame him, I hate them too but when it was all said and done, they were able to do 1 series which is what they needed. That was it. We were done. We headed back to the hotel where we wandered around, let Dylan buy a toy and then met up with our friends Andy & Lori for dinner. After dinner went back to the hotel, got our driver, went to the airport and hopped our flight home. After we took off, Dylan wrapped his arms around my arm and put his head down and went to sleep. My arm is still sore :)
*Findings... Nothing new or earth shattering. However, we have a new understanding of things. The researcher who delivered the results has written papers on holistic medicine and children (she's pro). She also explained that she rarely gives out an ADHD diagnosis because she feels it's over diagnosed. However... Dylan is extremely ADHD and needs meds. We have an appointment at the end of September to discuss medicine with his physician. She also said he has movement disorder (flapping), sensory processing delay, the auditory processing stuff may or may not be caused by the ADHD- we'll be able to know more after he starts meds.
And in a case of right time, right place... she's an adoptee... in reunion! I told her that we were considering reaching out to Dylan's first mother to share these findings. She said that she is pretty confident that Dylan's deletion is pro novo (just one of those things that happen during development vs. hereditary). She also put it this way.... he's already struggling to understand the world around him. Bringing the first mother into the picture now may not be the right thing for Dylan. We should wait until he is able to really understand adoption, first mother, etc. So, after much discussions, we are going to wait. However, we may reach out to the attorney in Guatemala so that she can let her know. We're not sure about it just yet. Stay tuned ;)
Friday, August 05, 2011
Common Sense is Anything But Common
Tuesday we discovered that Dylan's advocate's boss physically restrained Dylan which resulted in a finger like bruise to his wrist.
The story went like this... Dylan's advocate's boss (let's call her S) was shadowing Dylan and his advocate that day. Dylan was in last period at camp. It was gymnastics, something he struggles with greatly because it requires waiting his turn and that's pretty hard on any 6 year old, especially at the end of the day. They were doing an obstacle course and Dylan wanted to go over an archway that he was supposed to crawl under. His advocate corrected his behavior a few times till she finally decided to remove him from the area. He was getting angry and started to yell at her "I mad at you, you not my friend" and, according to S, pushed the advocate (who's 4x his size and wasn't concerned about the push).
Before the advocate had a chance to act, S swooped in behind Dylan, grabbed his wrists and pulled them across his body in, for lack of a better explanation, a straight jacket hold. Dylan began to cry that she was hurting him. Now, my sensory seeking child does not experience pain like the average child. It take a lot for him to be hurt and for him to say something was hurting and he was crying is a really big deal. The entire bunk knew this - from the advocate to the counselors, even the kids knew this was bad. The advocate told her to leave him be and she was told to be quiet and observe as "this is how we restain a child when they are escallating". Dylan, my dear sweet child, who never feels pain (at least not like most kids) was crying to be let go. "You're hurting me!" His advocate implored the woman to let him go and she told her to back off. After she released him, she demonstrated to the advocate on the senior counselor how to hold him. She told her there was no way in hell she'd do that to him and that if he needs to be held, she hugs him and that's it. He cried uncontrollable for a long time. The counselors, the advocate and kids were shocked. No one had seen him cry at all this summer.
When I called his advocate, she was hysterical crying. Her heart was broken. She felt terrible that she didn't protect him. She felt bad that she allowed this so-called case worker to hurt my boy. I don't blame her. Not at all. She loves Dylan like he is her own.
I spoke with just about everyone that matters. I saw the camp director that night and told her what happened. I called S's boss and talked to her. I called a friend who's an attorney who specializes in special needs.
Ultimately, she was reprimanded. A policy on use of restrain will be drawn up and it will no longer be left to an indivdual's interpretation or the hope that someone with this power would use common sense. Parents of children effected will be notified that their staff have been trained in restraint and share the policy with the families. I've received apologies from anyone and everyone (and so has Dylan).
There are no laws to protect children from unlawful restraint in my state. This needs to change. Yesterday I saw a tweet - a child had died from an overzealous caregiver restraining him in NJ. This young man was restrained by a supervisor who did “not follow protocol nor use proper techniques while to trying to restrain”. It scares me that the woman who restrained Dylan also did not follow protocol or use proper technqiues when restraining him. The difference here is that this young man needed to be restrained... Dylan did not.
S teaches at a special needs preschool. I'm really struggling if I should contact the people I know there and let them know what happened. I don't want her to lose her job. However I do want people to know that she could possibly do this again, to a small pre-schooler who may possibly be non-verbal.
I've heard through the grapevine that she had done this to other kids but they were non-vebal and their advocates didn't have the relationship with the families that mine has with us. So internet... what do I do??
The story went like this... Dylan's advocate's boss (let's call her S) was shadowing Dylan and his advocate that day. Dylan was in last period at camp. It was gymnastics, something he struggles with greatly because it requires waiting his turn and that's pretty hard on any 6 year old, especially at the end of the day. They were doing an obstacle course and Dylan wanted to go over an archway that he was supposed to crawl under. His advocate corrected his behavior a few times till she finally decided to remove him from the area. He was getting angry and started to yell at her "I mad at you, you not my friend" and, according to S, pushed the advocate (who's 4x his size and wasn't concerned about the push).
Before the advocate had a chance to act, S swooped in behind Dylan, grabbed his wrists and pulled them across his body in, for lack of a better explanation, a straight jacket hold. Dylan began to cry that she was hurting him. Now, my sensory seeking child does not experience pain like the average child. It take a lot for him to be hurt and for him to say something was hurting and he was crying is a really big deal. The entire bunk knew this - from the advocate to the counselors, even the kids knew this was bad. The advocate told her to leave him be and she was told to be quiet and observe as "this is how we restain a child when they are escallating". Dylan, my dear sweet child, who never feels pain (at least not like most kids) was crying to be let go. "You're hurting me!" His advocate implored the woman to let him go and she told her to back off. After she released him, she demonstrated to the advocate on the senior counselor how to hold him. She told her there was no way in hell she'd do that to him and that if he needs to be held, she hugs him and that's it. He cried uncontrollable for a long time. The counselors, the advocate and kids were shocked. No one had seen him cry at all this summer.
When I called his advocate, she was hysterical crying. Her heart was broken. She felt terrible that she didn't protect him. She felt bad that she allowed this so-called case worker to hurt my boy. I don't blame her. Not at all. She loves Dylan like he is her own.
I spoke with just about everyone that matters. I saw the camp director that night and told her what happened. I called S's boss and talked to her. I called a friend who's an attorney who specializes in special needs.
Ultimately, she was reprimanded. A policy on use of restrain will be drawn up and it will no longer be left to an indivdual's interpretation or the hope that someone with this power would use common sense. Parents of children effected will be notified that their staff have been trained in restraint and share the policy with the families. I've received apologies from anyone and everyone (and so has Dylan).
There are no laws to protect children from unlawful restraint in my state. This needs to change. Yesterday I saw a tweet - a child had died from an overzealous caregiver restraining him in NJ. This young man was restrained by a supervisor who did “not follow protocol nor use proper techniques while to trying to restrain”. It scares me that the woman who restrained Dylan also did not follow protocol or use proper technqiues when restraining him. The difference here is that this young man needed to be restrained... Dylan did not.
S teaches at a special needs preschool. I'm really struggling if I should contact the people I know there and let them know what happened. I don't want her to lose her job. However I do want people to know that she could possibly do this again, to a small pre-schooler who may possibly be non-verbal.
I've heard through the grapevine that she had done this to other kids but they were non-vebal and their advocates didn't have the relationship with the families that mine has with us. So internet... what do I do??
Wednesday, July 20, 2011
So Shines A Good Deed In A Weary World*
Several months ago, I entered a contest for Dylan to win a box of figets. He won and we got a box full of cool stuff like stress balls, a wall walker (kinda like a sticky octopus that you toss on the wall and it crawls down), smiley face stick figure, this cool ball made of a hard rubber that Dylan loves to chew on and some other neat stuff. We had been working on his writing and I figured this would be a good time to get him started on thank you notes. Never in a million years would I have thought it would have such an effect on this lovely blogger.
Then, being the proud Mama I am, I shared this with several people including those people who's efforts made it possible for Dylan to write the note. His kindergarten teacher being one of them. She wrote me back that she had a rough year. She loves the kids but she was actually considering getting out of education but my email reminded her of why she does the work she does.
Sometimes I forget that it's the little things that make the difference. Now I have to get my ass in gear and sit down with him and write thank you notes for his birthday gifts. Oy!
*Name that movie!
Then, being the proud Mama I am, I shared this with several people including those people who's efforts made it possible for Dylan to write the note. His kindergarten teacher being one of them. She wrote me back that she had a rough year. She loves the kids but she was actually considering getting out of education but my email reminded her of why she does the work she does.
Sometimes I forget that it's the little things that make the difference. Now I have to get my ass in gear and sit down with him and write thank you notes for his birthday gifts. Oy!
*Name that movie!
Wednesday, July 13, 2011
"What Did You Do To Him???"
Those were the words spoken to me on Dylan's second day of camp. They were spoken by one of the camp counselors at after care. She has been going on and on about how much his behavior has improved, how well he listens, doesn't run off, how verbal he's become (and understandable). What did we do?!?!
By the way - our first conversation, she realized that by saying how wonderful he's doing and how much he's improved, that he was a bit of a challenge (to put it mildly) he was last year and tried a bit to back peddle. It was okay, we've noticed lately too how much he's grown. Not just physically but emotionally and behaviorally.
Let's be honest - it's a year. The year between 5 and 6 is HUGE. Lots of room for growth and maturation in even a neurotypical child. But let's also consider how hard Dylan has worked this past year....
He's received...
Speech at school 3x a week. 2 one-on-one and 1 small group half hour sessions plus the speech work the therapist does with the entire classroom.
Private speech - 30 minutes on Saturday.
OT at school 3x a week (sometimes more depending on need). 2 one-on-one and 1 small group half hour sessions plus additional work in the clasroom. He needs so much OT that he'll even brush himself when he feels the need (self care has been a huge leap this year).
Behavioral therapy every other week not just for him but for us as a family.
Hippotherapy (a/k/a therapeutic riding) 1x a week for 30 minutes. He loves this! It's OT, PT and speech all rolled into one with some behavioral thrown in (when he is misbehaving a quick "what would Biscuit think!" usually snaps him back into reality).
Lego Learners 1x a week. Social skills program which works on fine and gross motor.
Educational tutoring 2-3x a week.
Now that I've written all that out, I realize that I would be more surprised if he hadn't blossemed over the past year. He has worked his adorable little tush off. We are so very proud of him.
Now he's enjoying camp. He spends his day with friends, swimming at least 2x a day, playing Gaga, soccer, hockey, basketball, doing arts & crafts, cooking, sledding (man made hill, they run water down it and the kids fly down on inner tubes), biking, nature, boating on the lake. OMG I wanna go to camp in the worse way!
By the way - our first conversation, she realized that by saying how wonderful he's doing and how much he's improved, that he was a bit of a challenge (to put it mildly) he was last year and tried a bit to back peddle. It was okay, we've noticed lately too how much he's grown. Not just physically but emotionally and behaviorally.
Let's be honest - it's a year. The year between 5 and 6 is HUGE. Lots of room for growth and maturation in even a neurotypical child. But let's also consider how hard Dylan has worked this past year....
He's received...
Speech at school 3x a week. 2 one-on-one and 1 small group half hour sessions plus the speech work the therapist does with the entire classroom.
Private speech - 30 minutes on Saturday.
OT at school 3x a week (sometimes more depending on need). 2 one-on-one and 1 small group half hour sessions plus additional work in the clasroom. He needs so much OT that he'll even brush himself when he feels the need (self care has been a huge leap this year).
Behavioral therapy every other week not just for him but for us as a family.
Hippotherapy (a/k/a therapeutic riding) 1x a week for 30 minutes. He loves this! It's OT, PT and speech all rolled into one with some behavioral thrown in (when he is misbehaving a quick "what would Biscuit think!" usually snaps him back into reality).
Lego Learners 1x a week. Social skills program which works on fine and gross motor.
Educational tutoring 2-3x a week.
Now that I've written all that out, I realize that I would be more surprised if he hadn't blossemed over the past year. He has worked his adorable little tush off. We are so very proud of him.
Now he's enjoying camp. He spends his day with friends, swimming at least 2x a day, playing Gaga, soccer, hockey, basketball, doing arts & crafts, cooking, sledding (man made hill, they run water down it and the kids fly down on inner tubes), biking, nature, boating on the lake. OMG I wanna go to camp in the worse way!
Wednesday, July 06, 2011
6 years ago today
A brave woman in Guatemala labored to bring an amazing boy into the world. 6 pounds 10 ounces of smiles and love. 2 days later, that child was no longer with his mother but rather a foster mother who would love and care for him for the next five months. Five months later, he was placed into our arms with the understanding and trust that we would love him and care for him with every fiber of our beings. For the 6 past 6 years, Dylan's first mother has never been far from my thoughts but they always come to the forefront during certain times. This is one of them. I hope my son's Mother is at peace and has happiness in her life. I pray that she feels this was the right decision for them both.
In August we go to Boston for a study on his genetic deletion. We will probably attempt to reach out to Dylan's first Mom after to share information and hopefully start a relationship. At the very least, I want her to know that her son is loved, honored and respected and so is she.
Dylan woke up this morning and announced "I am 6!" He had chicken nuggets for breakfast and then off to camp he went with a bag full of TastyKake treats for his bunk mates and counselors. Tonight we are off to a special birthday dinner.
Happy Birthday my sweet boy!
In August we go to Boston for a study on his genetic deletion. We will probably attempt to reach out to Dylan's first Mom after to share information and hopefully start a relationship. At the very least, I want her to know that her son is loved, honored and respected and so is she.
Dylan woke up this morning and announced "I am 6!" He had chicken nuggets for breakfast and then off to camp he went with a bag full of TastyKake treats for his bunk mates and counselors. Tonight we are off to a special birthday dinner.
Happy Birthday my sweet boy!
Thursday, June 16, 2011
Special Needs = Friendless??
Thankfully, not in our world.
Dylan goes to an aftercare program at a facility that has a wonderful special needs program. It ranges from children to adults and has everything from Passover Sedars, to drumming programs, to camp advocates and everything in between. It also prides itself on the fact that "special needs kids don't feel special here". Meaning, they are treated like everyone else and every effort is made for inclusion.
This type of community, one that embraces and works hard at inclusion has an interesting effect on the NT children and adults who spend time there.
When Dylan was in his school run after care program, it was a nightmare. The adults didn't facilitate play with the children and Dylan was routinely left out or exluded by the other children. The result was him acting out and being asked to leave the program.
We moved him into the program he is out now and, we've had some issues with Dylan's impulse control issues, it's been a wonderful experience.
Today, my best friend volunteered to pick him up at school and drop him off for me. She called me after she dropped him at aftercare and told me that she hopes when her son is older, the "same thing will happen to him". I asked her what she was talking about and she said "Dylan walked into the room and all the kids started yelling "Dylan, play with me! Be on my team!" ~insert tears of joy~ We've worried, because of his experience at the school program, that he wasn't included. I'm happy to say those worries were unfounded.
Dylan goes to an aftercare program at a facility that has a wonderful special needs program. It ranges from children to adults and has everything from Passover Sedars, to drumming programs, to camp advocates and everything in between. It also prides itself on the fact that "special needs kids don't feel special here". Meaning, they are treated like everyone else and every effort is made for inclusion.
This type of community, one that embraces and works hard at inclusion has an interesting effect on the NT children and adults who spend time there.
When Dylan was in his school run after care program, it was a nightmare. The adults didn't facilitate play with the children and Dylan was routinely left out or exluded by the other children. The result was him acting out and being asked to leave the program.
We moved him into the program he is out now and, we've had some issues with Dylan's impulse control issues, it's been a wonderful experience.
Today, my best friend volunteered to pick him up at school and drop him off for me. She called me after she dropped him at aftercare and told me that she hopes when her son is older, the "same thing will happen to him". I asked her what she was talking about and she said "Dylan walked into the room and all the kids started yelling "Dylan, play with me! Be on my team!" ~insert tears of joy~ We've worried, because of his experience at the school program, that he wasn't included. I'm happy to say those worries were unfounded.
Wednesday, June 15, 2011
Awesome Give Away
I love the SPDBN website. It has many bloggers facing challenges I face every day. They also have killer give aways. They just put up a new one where you can win $250 in sensory friendly products! Woo Hoo! I'd love that for my Dylan! So go check it out SPDBN's website to win it for yourself!
While you're there, check out the posts too - there are some amazing writers over there :)
While you're there, check out the posts too - there are some amazing writers over there :)
Monday, June 06, 2011
Adoption is a happy thing right??
Apparently, Kung Fu Panda 2 is generating a lot of conversations. Not just in the adoption world but in the non-adoption world.
A friend of mine's 7 year old son saw the movie and really, really got it (this kid is wicked smart). He came home and started up a conversation with his Mom about the loss the Panda suffered in his adoption. He connected that loss to a cousin who was adopted. "Does he feel sad that he can't be with is real family?" He asked her. She immediately corrected him and said that his parents are his real family. He asked her if adoption was a sad thing. She told him no, it's happy. I corrected her. I pointed out that adoption involves a triad of people. 2 of the 3 parties involved suffer tremendous loss. The birth family loses a child and the child loses their birth family, heritage, culture, etc. The only person who doesn't suffer a loss in adoption is the adoptive parents/family (although there is sometimes a loss of fertility but I feel that is a separate issue). I shared with her that how that loss manifests itself is going to vary from family to family, child to child, adult to adult. Just like everyone reacts differently to, say a sad movie (some will not be moved, some will cry, some be hysterical, others will roll their eyes and make light of it), everyone will respond to their adoption differently. Some children, young adults and adults of adoption feel tremendous loss. Don't believe me - there are lots of blogs out there by adoptees - go read them. Some children, young adults and adults of adoption feel no loss at all. There are many factors in what a person would feel from having an open adoption to just their personality and their level of comfort with their adoption. A person in an open adoption may feel differently from a perso in a closed or semi open adoption. A person adopted at birth may feel differently than a person adopted through foster care. A person adopted domestically vs. internationally is going to have difficult viewpoints as well.
She seemed to be uncomfortable with my end of the conversation. Which is absolutely understandable and okay. While she has family members who are adopted (internationally), adoption loss is just not a topic that typically comes up outside the immediate familly - hell, it quite often doesn't come up within the immediate family either!
My own history being what it is, I guess I'm hyper aware and watching for signs that Dylan is feeling loss from his adoption. I hope that I am able to convey an open door to him to let him know that it's okay to feel loss, to feel sad, to miss his first family, his culture, his country and it's okay to share it with us if he wants to.
I'm glad this movie is being a cataylyst for conversations about all aspects of adoption, not just the sunshine and rainbows. I'm grateful for good friends who feel comfortable coming to me with questions - the hard ones as well as the easy ones. I'm grateful I can go to them as well. I love my friends as we've all travelled very different roads which makes it easy to find answers to some of life's tougher questions (maybe not answers but at least ideas).
A friend of mine's 7 year old son saw the movie and really, really got it (this kid is wicked smart). He came home and started up a conversation with his Mom about the loss the Panda suffered in his adoption. He connected that loss to a cousin who was adopted. "Does he feel sad that he can't be with is real family?" He asked her. She immediately corrected him and said that his parents are his real family. He asked her if adoption was a sad thing. She told him no, it's happy. I corrected her. I pointed out that adoption involves a triad of people. 2 of the 3 parties involved suffer tremendous loss. The birth family loses a child and the child loses their birth family, heritage, culture, etc. The only person who doesn't suffer a loss in adoption is the adoptive parents/family (although there is sometimes a loss of fertility but I feel that is a separate issue). I shared with her that how that loss manifests itself is going to vary from family to family, child to child, adult to adult. Just like everyone reacts differently to, say a sad movie (some will not be moved, some will cry, some be hysterical, others will roll their eyes and make light of it), everyone will respond to their adoption differently. Some children, young adults and adults of adoption feel tremendous loss. Don't believe me - there are lots of blogs out there by adoptees - go read them. Some children, young adults and adults of adoption feel no loss at all. There are many factors in what a person would feel from having an open adoption to just their personality and their level of comfort with their adoption. A person in an open adoption may feel differently from a perso in a closed or semi open adoption. A person adopted at birth may feel differently than a person adopted through foster care. A person adopted domestically vs. internationally is going to have difficult viewpoints as well.
She seemed to be uncomfortable with my end of the conversation. Which is absolutely understandable and okay. While she has family members who are adopted (internationally), adoption loss is just not a topic that typically comes up outside the immediate familly - hell, it quite often doesn't come up within the immediate family either!
My own history being what it is, I guess I'm hyper aware and watching for signs that Dylan is feeling loss from his adoption. I hope that I am able to convey an open door to him to let him know that it's okay to feel loss, to feel sad, to miss his first family, his culture, his country and it's okay to share it with us if he wants to.
I'm glad this movie is being a cataylyst for conversations about all aspects of adoption, not just the sunshine and rainbows. I'm grateful for good friends who feel comfortable coming to me with questions - the hard ones as well as the easy ones. I'm grateful I can go to them as well. I love my friends as we've all travelled very different roads which makes it easy to find answers to some of life's tougher questions (maybe not answers but at least ideas).
Friday, May 20, 2011
Off we go - update
Well, we aren't going in 2 weeks. Turns out the researcher isn't available to we are hoping to do it the last week in August which would work better - it's between camp and school. Less daycare to pay, yay!
In other news, yesterday they were doing roadwork in front of our house. We decided to drive up the street to meet Dylan's bus. For some strange reason, Marc was convinced the bus driver would somehow know that there was construction going on (there were no signs) and decided to go over to the next street to keep an eye out for him. After he walked away, I called the bus company, asked them to radio the driver and let them know where we were. A second later, the bus turned into the street. I told Dylan to get his backpack only to find that Marc had it ~insert steam coming out of ears~. I hear "I'm coming" and here comes Marc, running at full speed, on a wet pavement. There goes Marc, twisting his ankle and falling into a patch of mud. Needless to say, the fall triggered Dylan's memory of Marc's seizure and totally freaked him out. Marc got up, limped over, we got Dylan on the bus and I took Marc home to change. He got back into the car, put his foot up on the dash and I said, okay - we're going to the hospital.
A few hours later, we left with an air cast and crutches and instructions to baby his sprained ankle for a few days.
Of course this means all the housework and yardwork we had planned to do this weekend will be done by yours truly - including mowing the lawn. Let's hope I can do it early enough that I don't end up in hives from the 80+ degree heat we are going to have this weekend.
Wait, I was planning to do the lawn Sunday.... if I get lucky - the rapture will happen and I won't have to mow the lawn. Oh wait, it's going to be hell on earth so I'm sure I will have to mow - it'll be my pentence for being the heathen that I am. ~le sigh~
In other news, yesterday they were doing roadwork in front of our house. We decided to drive up the street to meet Dylan's bus. For some strange reason, Marc was convinced the bus driver would somehow know that there was construction going on (there were no signs) and decided to go over to the next street to keep an eye out for him. After he walked away, I called the bus company, asked them to radio the driver and let them know where we were. A second later, the bus turned into the street. I told Dylan to get his backpack only to find that Marc had it ~insert steam coming out of ears~. I hear "I'm coming" and here comes Marc, running at full speed, on a wet pavement. There goes Marc, twisting his ankle and falling into a patch of mud. Needless to say, the fall triggered Dylan's memory of Marc's seizure and totally freaked him out. Marc got up, limped over, we got Dylan on the bus and I took Marc home to change. He got back into the car, put his foot up on the dash and I said, okay - we're going to the hospital.
A few hours later, we left with an air cast and crutches and instructions to baby his sprained ankle for a few days.
Of course this means all the housework and yardwork we had planned to do this weekend will be done by yours truly - including mowing the lawn. Let's hope I can do it early enough that I don't end up in hives from the 80+ degree heat we are going to have this weekend.
Wait, I was planning to do the lawn Sunday.... if I get lucky - the rapture will happen and I won't have to mow the lawn. Oh wait, it's going to be hell on earth so I'm sure I will have to mow - it'll be my pentence for being the heathen that I am. ~le sigh~
Wednesday, May 18, 2011
Off we go, into the wild blue yonder!
Dylan has been approved to be part of a study for children with the 16p11.2 genetic abnormality (they are studying both children with the deletion and the duplication. When we received Dylan's diagnosis (he has the deletion) I, the queen of Google, found the wonderful folks at Simons VIP Connect. There I found a great chat forum and the opportunity for Dylan to participate in this study. It's, for the most part, completely non-invasive. The most invasive part is a blood test and a possible MRI (if we can get him to sit for an hour - ~insert hysterical laughter~). I'm hoping he does because I'd like them to get a full picture.
I've found a great group of parents on Facebook and I've heard wonderful things about this study - especially their Boston location. Plus, because we are going to their Boston location - that means some quality time with our friends Andy, Lori and their three girls (one of which we haven't met yet!).
I've found a great group of parents on Facebook and I've heard wonderful things about this study - especially their Boston location. Plus, because we are going to their Boston location - that means some quality time with our friends Andy, Lori and their three girls (one of which we haven't met yet!).
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