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 ;)
Thursday, August 18, 2011
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??
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