Sorry I haven't updated sooner, with Kid Jedi getting tutoring, and, well him just being home all day, things for me are taking much longer to get done than normal.
There is an IEP in place, the doctor's recommendations were not included right now, they felt that they would go under the behavior plan that will be included when they get the behavioral therapist in, but, his wonderful teacher asked for a copy of the doctor's recommendations and I know she'll let his 1:1 know about it, I'll let the 1:1 know about it.
So what is included: Kid Jedi will have a 1:1 shadow every day all day at school starting Tuesday; his tutoring lesson on Friday as well as this coming Monday will be in his classroom to start transitioning him; the school OT will consult with him as needed once per week for 30 minutes (increasing to intervention or decreasing as needed); the behavioral therapist will be in to put a behavior plan in place and to work with Kid Jedi's teacher, 1:1 and us (and I will make sure that the doctor's recommendations are included); he will be removed from the classroom daily (like they do other children who need to work on reading, etc.) to work on following directions and focus (compliance is what they call it). Other than the doctor's recommendations not being directly included, I'm ok with the plan but I will keep on them especially since the doctor's recommendations include higher leveled work as needed.
All that being said, Kid Jedi will return to the classroom on Tuesday. His 1:1 will hopefully stop by during his tutoring session on Monday to meet him. He's excited, and scared. I'm nervous. The school is expecting him to get worse before he gets better.
As far as treatment, we haven't decided about medication, but, when we can get an appointment (they have a wait because of them being booked with appointments), we will be consulting with CHOP on that to make that decision (if we go, they do a full workup on him including an EKG before putting him on medication). We will be making an appointment this week to go back to the psychologist who diagnosed Kid Jedi for counseling...they are doing a research trial on a new therapy, but we'd have to either wait for the trial or wait for the meds (if we decide to do that) and we don't think that's in Kid Jedi's best interest.
On Friday during his tutoring, he did run out into the hallway once. This is a great improvement from his first week of school when he was in the classroom for 3 hours and ran out of the room, or tried to, 3 times; the tutoring session was 2 hours and he only left the room, or tried to once.
I picked up a notebook to send Kid Jedi back with which will be for us and his 1:1 to communicate in. I'm really nervous about letting him go, but I do know that this will be good for him.
I'm a Mom to a little boy who has Asperger Syndrome...this is our adventure.
Sunday, September 27, 2009
Thursday, September 24, 2009
Another step forward
Well, we got the recommendations from the doc. IEP/504 meeting is at 2:00 today, so I have to copy the school recommendations and get them to the Child Study Team early. I was going to email, but was told by my wonderful HIPAA knowledgeable hubby that email is not confidential and it would set a bad precedence for the communications, so now no email, but I have to take my ADHD combined type to the High School (where our Child Study Team is housed) so I can drop off the info so it can be included in the IEP/504 for our meeting this afternoon. I'm happy with the doctor's recommendations for the classroom so that's a plus. I'm just really hoping we can get him back in the classroom quickly.
Kid Jedi's been doing ok with his home instructor. I can really see his impulsivity when he works with her. He ran away from her twice today when he was supposed to be doing work, but, of course, things were different today than yesterday since DH and I were at the doctor's getting the report so my parents were here.
The doctor also told us of a clinical trial going on at the hospital comparing 2 different therapy protocols. We're trying to decide what to do with that. No meds at this point, we're not sure about that either especially with his asthma and he tested a little high on the anxiety scale and most of the meds increase anxiety. So, we have a lot of research and talking to do. But, hopefully we'll have a school plan in place and get Kid Jedi headed back to school.
Kid Jedi's been doing ok with his home instructor. I can really see his impulsivity when he works with her. He ran away from her twice today when he was supposed to be doing work, but, of course, things were different today than yesterday since DH and I were at the doctor's getting the report so my parents were here.
The doctor also told us of a clinical trial going on at the hospital comparing 2 different therapy protocols. We're trying to decide what to do with that. No meds at this point, we're not sure about that either especially with his asthma and he tested a little high on the anxiety scale and most of the meds increase anxiety. So, we have a lot of research and talking to do. But, hopefully we'll have a school plan in place and get Kid Jedi headed back to school.
Tuesday, September 22, 2009
Chugging along
So, Tuesdays I usually try to do a tackle, to say that it's been difficult to do the last few weeks is, well, an understatement. We have been dealing with Kid Jedi's school problems in that he's still not back in school, but we are getting a tutor today and she'll be with him 2 hours per day until he's back in the classroom. We should have an IEP meeting on Thursday, we don't have a definite time yet, but I'm hopeful that it will happen.
So, this week's tackle is just to get Kid Jedi learning some things, we did 1 hour of lessons this morning, he finished his lowercase alphabet section of the workbook and is almost finished the math readiness section, which is pretty good for an ADHD kid, we are taking a break right now and this afternoon we'll finish math readiness and do some reading. Library either today or tomorrow.
I also need to make Kid Jedi's allergist appointment for his Asthma, which is needed because he's starting to cough again.
I feel like the Little Engine that Could, and if I don't say "I think I can", I'm afraid I won't. I'll just keep going and we'll make it.
Check out 5M4M for Tackles.
So, this week's tackle is just to get Kid Jedi learning some things, we did 1 hour of lessons this morning, he finished his lowercase alphabet section of the workbook and is almost finished the math readiness section, which is pretty good for an ADHD kid, we are taking a break right now and this afternoon we'll finish math readiness and do some reading. Library either today or tomorrow.
I also need to make Kid Jedi's allergist appointment for his Asthma, which is needed because he's starting to cough again.
I feel like the Little Engine that Could, and if I don't say "I think I can", I'm afraid I won't. I'll just keep going and we'll make it.
Check out 5M4M for Tackles.
Thursday, September 17, 2009
We have a diagnosis!!!
So yesterday at the way too early hour of 8:00 we packed up to head to CHOP. Keep in mind it should only take about 1/2 hour for us to get there, but since we would be hitting rush hour traffic heading into Philadelphia, well, it took us almost an hour.
Well after finally getting in to see our doctor at 9:30, we talked, and talked, and talked about Kid Jedi's behavior, at home, in school, in Karate, from birth to now. Kid Jedi, at least, got to go play with the intern to get evaluated (I want his evaluation part next time). Then we got to answer some questions, go into more detail about things, bring Kid Jedi back in, go wait while the doctor and Kid Jedi played, again I want that part next time, and then some more talking.
Though we normally wouldn't have a diagnosis for about 2 weeks, since Kid Jedi's being kept home from school because the school can't or won't intervene until he's diagnosed, she told us that, yes Kid Jedi has ADHD, that's it, no anxiety, depression or ODD (which the Child Study Team thought he had), oh and of course he's gifted, which we knew, but she told us that he's actually more gifted than the IQ test shows because his ADHD causes false lows on those tests because of distractiblity. We (the hubby and I) go back next week for some ideas for intervention...no medication at this time (we saw a PhD, not an MD so if she wants meds, she has to refer us for a consult).
So, I call Child Study Team when I get home and tell them, yes he has ADHD, to which she asks about ODD, and I tell her, very proudly (and smugly) "Nope!" I didn't get into the giftedness, they should realize that with his test scores, but the psychiatrist will include recommendations for that in her report. Then, she asked for recommendations...hello...she's lucky we got a diagnosis. The way she talked previously, she had worked with other students going to CHOP previously, but apparently not, because otherwise she would have known that it usually takes at least 2 weeks for diagnosis and recommendations, not the same day. Of course, I pleasantly told her that we were lucky that we got a diagnosis, they only did that because of Kid Jedi being kept out of school. To which she responded that she would contact our principal and tell him what's going on.
I called the teacher's extension to let her know what was going on and to let her know that I would be attending Back to School Night tonight. I also thanked her for everything she's done. After all this, the little girl next store, who is in Kid Jedi's class, brought over a folder of some worksheets and papers for us, which I am grateful for. I'm so glad that even through this battle, Kid Jedi has a teacher who really cares about her students (even if he's too much for her classroom right now).
So today I call the Child Study Team, again, to see what we can expect next and the timeline that they have in mind for getting Kid Jedi back in the classroom!
Well after finally getting in to see our doctor at 9:30, we talked, and talked, and talked about Kid Jedi's behavior, at home, in school, in Karate, from birth to now. Kid Jedi, at least, got to go play with the intern to get evaluated (I want his evaluation part next time). Then we got to answer some questions, go into more detail about things, bring Kid Jedi back in, go wait while the doctor and Kid Jedi played, again I want that part next time, and then some more talking.
Though we normally wouldn't have a diagnosis for about 2 weeks, since Kid Jedi's being kept home from school because the school can't or won't intervene until he's diagnosed, she told us that, yes Kid Jedi has ADHD, that's it, no anxiety, depression or ODD (which the Child Study Team thought he had), oh and of course he's gifted, which we knew, but she told us that he's actually more gifted than the IQ test shows because his ADHD causes false lows on those tests because of distractiblity. We (the hubby and I) go back next week for some ideas for intervention...no medication at this time (we saw a PhD, not an MD so if she wants meds, she has to refer us for a consult).
So, I call Child Study Team when I get home and tell them, yes he has ADHD, to which she asks about ODD, and I tell her, very proudly (and smugly) "Nope!" I didn't get into the giftedness, they should realize that with his test scores, but the psychiatrist will include recommendations for that in her report. Then, she asked for recommendations...hello...she's lucky we got a diagnosis. The way she talked previously, she had worked with other students going to CHOP previously, but apparently not, because otherwise she would have known that it usually takes at least 2 weeks for diagnosis and recommendations, not the same day. Of course, I pleasantly told her that we were lucky that we got a diagnosis, they only did that because of Kid Jedi being kept out of school. To which she responded that she would contact our principal and tell him what's going on.
I called the teacher's extension to let her know what was going on and to let her know that I would be attending Back to School Night tonight. I also thanked her for everything she's done. After all this, the little girl next store, who is in Kid Jedi's class, brought over a folder of some worksheets and papers for us, which I am grateful for. I'm so glad that even through this battle, Kid Jedi has a teacher who really cares about her students (even if he's too much for her classroom right now).
So today I call the Child Study Team, again, to see what we can expect next and the timeline that they have in mind for getting Kid Jedi back in the classroom!
Saturday, September 12, 2009
No school for a while
So, Kid Jedi went back to school yesterday and I got a call at 10:30 from the head of the Child Study Team. Their new recommendation is that we keep Kid Jedi home until he has his evaluation from CHOP on Wednesday. She said that he's learning bad habits and it can be detrimental to him to keep being punished for his doing things he has no real control over. So we'll be homeschooling for the next few days. His teacher sent home some worksheets, and said she'd work with me to get some more work to him, but they aren't doing a whole lot in class right now. Oh, and I can see why he doesn't want to do the work they give him. It's worksheets where you write the letters and then circle them in the picture below, and on the back it's coloring. Exactly the thing that Child Study Team said was torture for him last year!
He was supposed to stay until 12, but I picked him up at 10:45 at the Guidance Counsellor's office, she was great with him. He actually drew a flower on the chalkboard, my son who can't stand to write or draw drew the most beautiful flower! Again, I heard how much he wants to please and how smart he is, but he just can't control himself.
Child Study Team thinks he may have ADHD, but he definitely has some sensory issues. We'll see on Wednesday. In the meantime, I'll work with him here which will probably put him even further ahead of where they are teaching. When I worked with him Thursday, I went over 25 sight words that he should know by the end of Kindergarten, well he knew 19 of them, and of the 6 he said he didn't know, I've seen him read 4 of them. We're now working on writing them.
The school is hiring an one-on-one aid for him, they are looking for someone who has experience working with kids like Kid Jedi. Hopefully this will all work out. He's too smart to let fall through the cracks!
He was supposed to stay until 12, but I picked him up at 10:45 at the Guidance Counsellor's office, she was great with him. He actually drew a flower on the chalkboard, my son who can't stand to write or draw drew the most beautiful flower! Again, I heard how much he wants to please and how smart he is, but he just can't control himself.
Child Study Team thinks he may have ADHD, but he definitely has some sensory issues. We'll see on Wednesday. In the meantime, I'll work with him here which will probably put him even further ahead of where they are teaching. When I worked with him Thursday, I went over 25 sight words that he should know by the end of Kindergarten, well he knew 19 of them, and of the 6 he said he didn't know, I've seen him read 4 of them. We're now working on writing them.
The school is hiring an one-on-one aid for him, they are looking for someone who has experience working with kids like Kid Jedi. Hopefully this will all work out. He's too smart to let fall through the cracks!
Friday, September 11, 2009
Looong first week of school
Well, to say that it's been a bad week would have to be an understatement. We got a call from the principal the first day of school to discuss Kid Jedi's behavior in the classroom. He called in the Child Study Team, you know, the people who said there was nothing wrong with Kid Jedi, he was just bored. Well, they went to see him on Day 2 of school, which was apparently worse than Day 1 since I got a call at 11 asking to come meet with the principal to discuss Kid Jedi's behavior and our options. He advised that a Behavior Therapist would be coming in to set up a Behavior Plan for the teacher and said that if we wanted, we could keep Kid Jedi home until the therapist could come in. Yeah, not happening, he needs to get adjusted and keeping him out until next Friday does him and his teacher an injustice because they lose that time to build an understanding of each other.
I did mention to the principal that I didn't want Kid Jedi to fall behind, I almost heard laughter at that, he said that that would not be a problem, he was very impressed with his vocabulary, and apparently Kid Jedi is the only Kindergartner or First Grader who can say his (the principal) name correctly.
After the first day, we called the ADHD Management Team at CHOP to see if we could move Kid Jedi's 9/22 evaluation appointment up, he's now going 9/16 and if anyone cancels in the meantime, we'll go in even earlier, though at this point I don't think that will happen.
And to top all this off one of our cats died after Kid Jedi went to bed on the first day of school, so I got to pick him up early from the principals office and then tell him what happened. We decided to keep him home yesterday because he was having such a difficult time with dealing with the cat's death (and yesterday was a full day, not 1/2 like the first 2 days), we knew that he would be even more unbearable in school.
So as of right now, his interventions are a weighted vest (I hope this works, I put something on his lap yesterday while we were doing some work and it helped), and he will have a shortened school day until we see what CHOP recommends. Next Friday the Behavior Therapist comes in and a behavior plan will be in place. The Child Study Team will be providing me with a report to take to CHOP on Wednesday so they can see what his school behavior has been and what they decided to try.
Here's hoping today will be better.
I did mention to the principal that I didn't want Kid Jedi to fall behind, I almost heard laughter at that, he said that that would not be a problem, he was very impressed with his vocabulary, and apparently Kid Jedi is the only Kindergartner or First Grader who can say his (the principal) name correctly.
After the first day, we called the ADHD Management Team at CHOP to see if we could move Kid Jedi's 9/22 evaluation appointment up, he's now going 9/16 and if anyone cancels in the meantime, we'll go in even earlier, though at this point I don't think that will happen.
And to top all this off one of our cats died after Kid Jedi went to bed on the first day of school, so I got to pick him up early from the principals office and then tell him what happened. We decided to keep him home yesterday because he was having such a difficult time with dealing with the cat's death (and yesterday was a full day, not 1/2 like the first 2 days), we knew that he would be even more unbearable in school.
So as of right now, his interventions are a weighted vest (I hope this works, I put something on his lap yesterday while we were doing some work and it helped), and he will have a shortened school day until we see what CHOP recommends. Next Friday the Behavior Therapist comes in and a behavior plan will be in place. The Child Study Team will be providing me with a report to take to CHOP on Wednesday so they can see what his school behavior has been and what they decided to try.
Here's hoping today will be better.
Wednesday, September 2, 2009
Met Kid Jedi's Teacher
Today was the Kindergarten Meet and Greet at our preschool I'd love to post pics of Kid Jedi with his teacher, but I forgot to take them. This is him getting ready to go.
This is him in his seat, which will probably be moved.
The reason it will probably be moved, is that in the 1 hour that he was in his classroom for his Meet and Greet, he decided at one point to try to go back to the playground. And, since his Kindergarten class has 20 students, one teacher, no aides, she's moving him so he doesn't have a beeline to the door.
He got the teacher that came to our Child Study Team conference, which is good. She talked with me a bit after the Meet & Greet, told me about him trying to leave and expressed some concern over his immature grip, she verified with me that they thought he didn't need OT for that, and yes, of course, when he was with the OT he held his marker the correct way, well, once he was verbally corrected. I advised his teacher that we were getting him evaluated by CHOP and she is more than willing to work with us. She is a wonderful teacher and very open to our input on what she can do to make it easier for Len, which is great. I'm going to be keeping in touch with her a lot this year, and try to figure out what helps Len so we can get a plan in place for him that will follow him and make his school life easier.
We will be going back to school on Tuesday, so hopefully he will get into the swing of things and the routine will help him. He tends to be a little better when he knows what to expect, but, well you never know with him.
Tuesday, September 1, 2009
Tackle it Tuesday - Ending summer
Well, Kid Jedi starts Kindergarten one week from today. I'm happy for him, but sad for me, I'll miss him being here. Next week I'll do my back-to-school post about what we did to get him prepared, but this week, I'm just cleaning up summer.
We have this one last week of summer, though I don't think we'll be heading to the pool since it's in the 70s this week. This week is the week that I make sure Kid Jedi goes to bed on time and gets up by 7 so he can be ready to be at school by 8:20. We are also reorganizing our home with a lunch station in the kitchen (Kid Jedi has full-day Kindergarten so we get to pack lunches for the first time), cleaning the launch pad and setting it up for backpacks instead of beach bags, getting an area in the kitchen or dining room set up so we have anything he'll need for homework together, and, well taking advantage of these last free days before schedules become our life.
I don't have any pictures yet since I'm still in the cleaning up stage, but, they will come (probably next week). I'm also looking for good, healthy, ideas for school lunches for a kid who doesn't eat a whole lot of fruits and veggies.
This is what I'm, sadly, tackling this week, head on over to 5MFM to see what other Moms are tackling and let us know what you are doing.
We have this one last week of summer, though I don't think we'll be heading to the pool since it's in the 70s this week. This week is the week that I make sure Kid Jedi goes to bed on time and gets up by 7 so he can be ready to be at school by 8:20. We are also reorganizing our home with a lunch station in the kitchen (Kid Jedi has full-day Kindergarten so we get to pack lunches for the first time), cleaning the launch pad and setting it up for backpacks instead of beach bags, getting an area in the kitchen or dining room set up so we have anything he'll need for homework together, and, well taking advantage of these last free days before schedules become our life.
I don't have any pictures yet since I'm still in the cleaning up stage, but, they will come (probably next week). I'm also looking for good, healthy, ideas for school lunches for a kid who doesn't eat a whole lot of fruits and veggies.
This is what I'm, sadly, tackling this week, head on over to 5MFM to see what other Moms are tackling and let us know what you are doing.
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