New symptoms, new doctors, possibly new diagnosis

We've been going through some issues here...well, at least we're facing the issues.  I'm not really even sure they should be called issues, more like ways of life.  As we all know, Kid Jedi was diagnosed last September with ADHD.  Well, at the time, our wonderful doctor went over the lay of the land as far as ADHD and ASD go... basically ADHD is one step, maybe not even a step, off of the Autism Spectrum.  And as far as Kid Jedi is concerned, he kind of teetered on that step, she felt he fell just to the ADHD side because he made friends...doesn't that just give you the warm fuzzies.  Well, 1 year and 5, almost 6, months later and the hyperactivity has slowed (not gone away, but slowed) and we're seeing more of Kid Jedi's true personality come through, and it's a great personality.

The problem is, and there always is a problem with a Special Needs child, that as the ADHD symptoms are coming under control, we are seeing how he really doesn't get social cues from anyone, he's overly obsessed with certain subjects, he can't look you in the eye (and he really tries), he has routines he has to follow, and most significantly, he doesn't understand when other kids aren't being nice to him yet he still wants to play with them.

That all being said, I have been asked recently by many friends and family members if I was sure that Kid Jedi didn't have Asperger's.  I had friends who said that there was a high chance that he would eventually wind up with an Asperger's diagnosis from the beginning, but I think the one that really got me was my cousin who has a not so little boy (he's in college) with Asperger's and as I was telling her about the issues Kid Jedi has, she repeatedly asked if I was sure he wasn't an Aspie...then came the friend from HS that I "met" on Facebook, and she was telling me about her son who was diagnosed with ADHD, then it got changed to Asperger's.  

All this time, we had been concerned about Kid Jedi's OCD-ish tendencies.  Then came the slap in the face.  I was reading The Best Kind of Different by Shonda Schilling (I picked it up because it was about Asperger's and we were starting to suspect this a lot).  As I read the Foreward by the doctor that diagnosed their son, Grant, I kept saying to myself, that's Kid Jedi, that's my son.  Needless to say I called the pediatrician on Monday to get a recommendation and we now have an appointment with a Neurologist on May 3.

Going into this figuring that he will wind up this diagnosis helps, but I know it's going to mean a lot of work with us, but it will be good knowing what we are dealing with no matter what comes back.  So now we get to go through the almost 2 month waiting period (which is much better than the standard 3-4 months that most people in this area are facing).

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Top Ten reasons ADHD is a blessing

ADHD is always treated as a curse, you always hear about the problems, here are my top 10 reasons I choose to see ADHD as a blessing.

1. Every day is a new adventure, literally Kid Jedi has daily adventures fighting to save the universe from some evil force.

2. You learn everything there is to know about a subject, even the minutest detail because obscure questions come up about everything.

3. You know all the different types of Lego bricks, and how many sets you are "missing".

4. You are always challenged to run, whether you want to or not.

5. You hear stories that amaze you at the creativity, like the one I have about an Alligator named Lorraine who eats piranha (Kid Jedi is in Kindergarten).

6. You collect complete sets of things: books, Lego series, sticks.

7. You get to spend lots of time outside.

8. You get lots of stories to tell and blog about.

9. You are challenged to make simple things like homework really interesting...we play a game to learn spelling words.

10. You learn patience, love, tolerance and most of all you learn that sometimes your brain just moves too fast for the rest of the world.

Not to say that ADHD doesn't have it's downside, it definitely has that, but that's another list...

Check out other Top Ten lists at Its Come 2 This

The Eco-friendly AD/HD Child

One thing to love, and hate, about having AD/HD in our life is the ability of Kid Jedi to feel passionately and unwaveringly about something. In our case it is the environment. Kid Jedi thinks it's his personal calling in life to save the Earth. We went to HersheyPark yesterday for their Springtime in the Park celebration. He wanted to pick up all the trash people left on the ground and more than once was heard saying "these people don't love the earth, they are ruining it because they leave their trash everywhere". My DH told me that when they were getting on The Howler, he said that "HersheyPark doesn't love the Earth, the plants they have aren't from here, they took out plants from here and put these plants here, that isn't good for the Earth."

I will take full responsibility for his overzealous opinions toward littering and recycling, but I have no idea where he learned about native plants being better.

He was also upset with the poor guy making the Kettle Corn because he threw the empty oil bottles into the trash instead of recycling them...we must give him the benefit of the doubt that he may normally recycle, but when they have a line that keeps growing and he has to refill his oil, popcorn and sugar, efficiency is his priority, not recycling.

I love that my son is so concerned about the environment, but I never realized how much he sees and understands about what is good and bad for the environment.

Good first week back at school

Kid Jedi's first week, well 4 days, back at school were a success! The first day was the only day he had a meltdown, which is pretty good seeing as he went from no school for 2 weeks to being in school from 8:20-3:15. The second day he threw something, again, didn't happen again. Third day, he was under the table several times and took his shoes off, he said they felt tight - he doesn't really like to wear shoes. Forth day, he says he took his shoes off but the Aide didn't say he did and he played with playdoh when he wasn't supposed to, but whoever thought that leaving playdoh at the Kindergartner's table where they have to sit all day was a good idea?

Thursday the behavioral therapist came in and put Kid Jedi on a behavior plan, they divide the day into 14 segments, he starts on blue, one warning gets him green, two yellow and three red. If he gets green or yellow he gets a sticker. He needs to earn 11 stickers and he gets a reward when he comes home. Thursday he got 11 stickers, Friday 12.

The happiest part of the week for me, other than the smile on his face at pick up, was on Friday he told me how much he liked school. That's a big thing since last year he kept telling me that he wanted to stay home on the days he had PreK, he only went for 2-1/2 hours 3 days per week.

I'm waiting on my DH to decide what time of day is good for appointments so we can start counselling and for a call back from CHOP to get an appointment regarding medication (we still aren't sure what we are going to do, but figured going to the professionals would give us more and better information than we can get researching it on our own).

Kid Jedi's 1:1 shadow told me on Wednesday that she's already in love with him, he's such a great kid, his teacher gave me a lot of credit for being able to keep up with him. Oh, and Kid Jedi told me on Thursday that there's a little girl in his class at Table 1 and they are in love with each other.

We went to a birthday party for one of the little girls in his class on Friday night, everyone said hi to him and seemed excited to see him. And the birthday girl apparently always talks about him. I'm glad he's made a positive impression on the kids especially with as bad of a start to the school year as he had.

I'm not too happy that they don't seem to be incorporating what the doctor from CHOP had recommended for him in reference to keeping him challenged, especially since he thinks math is boring (they were drawing three of things one day). Of course, this is the first week and he has to walk before he can run and he needs to stay focused on what the whole class is assigned before he can get more challenging work.

On the down side, we had to pull him from karate. He wasn't improving his behavior there and we got a call on Wednesday from his instructor about doing individual lessons, but there was no way we could afford that, and I don't think that's the best thing for him right now anyway.

Here's hoping to an even better week next week.

We have a plan!

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.

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.

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!

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!

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.

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.

Kid Jedi is out of control!

Well, the first day of karate wasn't good at all. Well, actually the first 20 minutes weren't too bad, but the last 25, well, my hubby thought we'd be asked to never bring Kid Jedi back again, EVER!!! Well, because of this, I did some research on impulse control.

We were told when we had the Child Study Team evaluation that Kid Jedi's problems in school were basically that he was bored because he knew what they were learning and since he has problems with things like coloring, which they use to teach the kids what Kid Jedi already knew, it was torture for him. He could use some orthotics to help with his balance and intoeing (which I've been trying to get someone to do something about for 2-1/2 years)...oh and there's a slight chance that he has Sensor Processing Disorder, so go buy a book and do what it says...a whole lot of help I can tell you. We went to the pediatrician and did get Kid Jedi the orthotics and they recommended a place to have him evaluated for Sensory Processing Disorder, but it's not covered by our insurance and it's $400 just for the 1-1/2 hour evaluation!! Well, we've put that off for a bit, not only because of the price but because my husband doesn't think Kid Jedi really has SPD, but that the Child Study Team put that out there to justify their evaluation, especially since the OT couldn't find anything wrong with Kid Jedi's pencil grip which the head of the Child Study Team said was very immature. Oh, and his non-verbal IQ is 129, overall 119 and that's with him refusing to complete a section of the test.

Anyway, back to the research, everything I kept coming across referred to ADHD, now I've been saying for a long time to anyone who listens that there's no way my son could have ADHD because he can sit all day and play with Lego blocks without a problem. Well at a family graduation party, my cousin told me her son had ADHD and she had the same reservation about the diagnosis, but they explained that they could hyperfocus at times too, and that's what I kept coming across, especially if they are in the impulse control/hyperactive side of ADHD and not the inattentiveness side. So, needless to say I called our pediatrician today and we are working with CHOPS Center for Management of ADHD to get him evaluated, we won't be able to actually see a doctor until the end of September or the beginning of October, but they do a full battery of tests - IQ, basic skills, depression, anxiety, and a 2 hour psych eval, the psych eval alone is about as much time as our Child Study Team spent evaluating him. To give due to the Child Study Team, since Kid Jedi was in preschool at the time of the evaluation, they had to look at him for early intervention and since his IQ was so high and he had no obvious learning disabilities, there wasn't much they could do. I do know that ADHD is not commonly diagnosed in 5 year olds, but we need something here. Since he's been out of school, he's just been getting more and more unruly, he even was sent out of Sunday School 2 weeks ago because he kept trying to crawl to the door.

I'll let you know how things go.