ADHD, ODD and Aspergers, oh my!

I have talked some before about Jeriah's Aspergers and how he is doing such a fantastic job with school and social situattions, and learning and all that. And I have mentioned briefly about Cephas and his ADHD. Well, here's a little bit of an update about these two kiddos.

Jeriah is still doing an amazing job at school. He has adapted quite nicely to his school routine and to his work and expectations there. His grades at school are all at either meeting or exceeding district standards, which is amazing. At home, though, it's a different story. He has been really defiant and refuses to help out or cooperate or whatever. It's trying on a mama, let me tell you. There are some days and situations where my energy and abilities are long spent just a few hours after he wakes up. I need to schedule another appointment for him with our therapist. This mama needs some resources to deal with this very strong-willed child. He is amazingly smart and I adore him to pieces, but I'm at a point where I need some kind of resources and ideas for what to do now.

I had this same issue with Cephas at this age. It was so INCREDIBLY difficult because with Cephas, I had two younger children at this age, one of which was a baby. With Jeriah, I think it's almost worse though, because I also have Cephas at his current stage, which is taxing at this point, to say the least.

Cephas was diagnosed with ADHD last Spring ('12) and we didn't want to medicate initially. Plus, he had Midget Football, which took up a LOT of time and energy and everything else. It was something that was physically grueling for him and kept him busy enough that he was too exhausted on a regular basis to act out. And then football season ended. And then we started back in with some of the issues.

Two weeks ago, after about a month of really considering the options, we went ahead and met with someone in the psychology office who is in charge of prescribing medications. She put him on a low dose of one ADHD med for him to take that week. It's a short-acting medication and is only in his system for a very limited period of time. Then, the second week (this week), the dose was doubled and would last for twice as long. And it has done an AMAZING job for him at school. He has been able to focus and not even his best friend goofing around here and there has been much of a distraction issue while he is in school. But then, he gets home, the medication wears off and we have our hands FULL. I try to get him to do his chores and homework immediately after school while his meds are still possibly in effect, but if something comes up and we're delayed by an hour or so, the rest of the night is a complete struggle.

Anyhow, before I go into all of that, I should share about the visit that we had with his psychologist before we went to meet with the person in the office who makes the medication decisions. Anyhow, I was talking to the psychologist and told her that it often feels like in addition to his ADHD (which we have talked about and worked with at length) that it feels like he also has ODD (Oppositional Defiance Disorder) and sometimes a touch of depression and with all of these things combined, it's like he has bi-polar or something.

She validated my feelings about all of that and showed my Cephas' graded assessments, in which his scores were 99.99% ADHD, 99.99% ODD, 99.99% Aggression (something or other) and I was like, Oh wow. Suddenly, it all seems to make sense. It's not just me losing my mind with this child (whom I love dearly, don't get me wrong!)

So, we met with the other person and started him on this medication. We have a meeting with both women coming up this next week and I cannot wait! There's potential that we will end up giving Cephas the low-dose med after school to get him through the evening and we may end up needing to give him another one to help him sleep as well. I don't know if I have ever mentioned this, but I really and truly dislike medications, but we are at the point where there's little other choice. We cannot have him un-medicated right now. But part of the problem that we are having right now is a side effect from the med of restlessness and insomnia. He's always had sleep issues and now on top of that, he has a medication that makes him more prone to it. So, in addition to the medication wearing off around the same time that he gets home from school, he's also not sleeping well at night and he is excessively tired, yet restless at the same time. It seems to be a vicious cycle.

These past few days in particular have been extremely challenging. I think that there has been three days in a row now that have me at my wit's end. The first two days that he was on the stronger dose, we didn't really have any major issues. However, I do think that by the third day, the sleep issue was really starting to catch up with him. All I know for sure is that I cannot wait until next week to meet with both ladies. I don't know if they are going to change his med, add on to it for the evening hours, or give him a sleeping aid of some sort. I almost want to try for the sleep aid first and see if that helps with the evening hours and the restlessness and insomnia issue first. But I don't know what route would be best to go.

It seems that he functions best when he is over-scheduled. You know, there was a big thing about kids being too over-scheduled and how they don't have downtime in our society, etc for quite a while a few years back. But Cephas seems to thrive and function the best when he is constantly on the go. However, I can't do it. Even if I don't have to do all of it, I'm still the one that has to take him here, there and everywhere else and it wears me out.

Right now, we have him involved in Swim Club. (Koren is also in Swim Club, while Oralee and Jeriah are in swim lessons.) Swim Club is quite physically demanding. Koren was complaining that they pushed him too hard, but Cephas kept pace with it really well. He has to do Swim Club before he can do Swim Team. I cannot wait for him to do Swim Team. He needs that intensity. Right now, Swim Club is twice a week. After this session is over, I plan on keeping Koren in Club and putting Cephas on the Team. Hopefully that will help matters as well. Then, this Spring, Cephas will also be playing soccer, Koren will be playing flag football, Oralee will be playing volleyball and Jeriah will be in soccer as well. It's such a demanding sports schedule, but given the similarities between Cephas and Jeriah at Jeriah's current age, I think it may be very beneficial to keep him busy as well. I've also toyed with the idea of having the boys do gymnastics, as Koren wants to and so does Jeriah. Oralee wants to do dance classes.

Anyone else exhausted just thinking about this? Because I am just from typing it and trying to keep it all straight. If I am sparse in posting over the next few weeks, this is why. I'm just trying to keep up with my ASD kiddos.

I also got into a huge disagreement with one of my best friends tonight. This is someone who hasn't been around for just over six months because he was deployed for a month, then he was home for about a month and has been gone for another three months. He doesn't spend all that much time with Cephas either. But as I was talking to him about just the ADHD, ODD, the meds and the current struggle, he made the mistake of telling me that Cephas doesn't have a disorder, that he's just twelve and developing his personality and such. This friend does not have children, does not work with children, rarely is even around children, much less any Spectrum children. Needless to say, we did not exactly see eye to eye about it and our discussion got heated and in the end, I unfriended him on Facebook. I told Bree about the conversation, as her son also has ADHD and ODD, although he's three years younger than Cephas is. But she understands what I'm going through with Cephas. And while she doesn't always understand completely what I'm going through with Jeriah, she's there and she's supportive and validates what it is that I'm feeling and going through with him. This other friend did the exact opposite. I also happened to be talking to Bree on Facebook and she was also getting riled up about this other friend's attitude.

This other friend gets home from his deployment tomorrow and I unfriended him tonight. Not exactly the best timing, but I was angry. Livid, really. I also wanted to talk to his wife tonight, before he gets home tomorrow, to let her know where I stood with her husband at this point in time. Let's just say, he really isn't scoring points with anyone at this point in time. His wife said that he was lucky this conversation took place while he is deployed and that it wasn't in front of her because she'd end up telling him a thing or two herself. I used to get along with him better than I did with her, but over the last few years, I have really lost a lot of respect for him. I hate to say that and to feel that way, but that's just the way that it is. I'm really grateful though, to have rediscovered such a good friend in his wife.

Okay, so this post was in large part an update and also a vent. Sometimes, it is so hard to balance all of this stress though. Thanks for reading through this. I'm exhausted and probably a little worked up yet. And to add to the stress, I also just found out today that Hubby is going to be back to work six to seven days each week. That is going to take yet another toll on me, because I'm going to lose him as a regular resource on Sundays. Wish me luck?

Follow-Up Post

to the Super Busy-ness post that I wrote the other day. Gail and I were talking in the comments section of that post about the whole school situation with Jeriah and I had typed up a VERY lengthy response to her and then Jeriah bumped the laptop, my thumb hit something and it went "kapoof" because "poof" doesn't adequately convey my feelings about losing such a lengthy reply.

So I told her that I would type it up again as a blog post since it was sufficiently long enough to be a post in itself! So here goes!

Gail said (and I quote): "Wow. You have a lot on your plate. I pray that the Lord gives you direction. To go from an IEP into a neurotypical classroom is a big deal. To deal with a possible diagnosis of Aspberger's can be either devastating or a relief. Bless you in your journey!"

It is a big thing to go from an IEP to a neurotypical classroom. A very big deal indeed! There are some major factors to consider both for and against having him enroll in Kindergarten this fall.

Against:

• He has his social challenges. He may not fit in well with the classroom's expectations of a nuerotypical student.
• By continuing to have him in Preschool as a peer model, he would have another year to develop those skills to behave more neurotypically, like the other students. (I think I made that word up.)
• Most parents (according to the Services Coordinator at the school) who start their kid earlier in school end up wishing that they had waited a year for their child to develop more socially. She has never heard a parent say that they wish they had started their child early. (I set her straight on that one. More about that following the "For:" section.)
• It's Full Day Kindergarten. He still naps nearly every day. On the way home from school on the bus.
• He would be one of the very youngest in the Kindergarten classroom.

For:

• He is on grade level with the Kindergarten students where they are right now. If I wanted to drop him in Kindergarten, he has the academic knowledge to keep up with them right now.
• If we wait another year, he could well be at a mid-1st grade level when he starts Kindergarten. I am afraid that if he is too far ahead of the curriculum, he will be bored and more likely to have behavioral issues out of sheer boredom. It is very difficult to have a child placed in higher level material in our school system. Or as I like to say, "No Child Left Behind (and No Student Achieving Ahead of the Others)". Wrong? Maybe. But it is my opinion.
• There is no guarantee that he will develop those skills with another year of Preschool.
• He is a very regimented and routine child. I strongly believe that if he were to go into Kindergarten, he would learn the routine and the expectations and would thrive.
• He is my youngest child. Having him home in the mornings is one of the main reasons why I am not volunteering in the school during the morning hours. If he is at school, I am free to go into the school to help him during the day as well. I currently do that with other students in the afternoon in second grade. (I'm a volunteer "interventionist" for reading and math.)
• He would be one of the oldest in the Preschool classroom.
• I have practiced with him on the lunch room routine. My kids eat breakfast at school, so I started sticking around and letting Jeriah eat with the rest of them. Within a week's time (five days of practicing this routine once each day), he was capable of (on his own!) going into the lunch room, putting his coat on a chair, lining up (and having appropriate line behaviors), getting his milk, choosing what he wants for breakfast (in a timely manner), carrying his tray to the check-out lady, giving her his name so she could ring it in to his account, taking his tray over to another table to pick up a spoon, napkin and straw, then carrying his tray to the table where he placed his coat. Once at the table, he raises his hand for the teacher to come by and open his cereal for him (as do most of the current Kindergartners and even some first graders) and he can open his own milk container. He can pour his own milk on his cereal and then eat in the allotted time frame that they are given. He is able to take his tray up when he is finished, dump his milk and cereal bowl in the "wet" bucket, drop his silverware in the silverware bucket, dump his trash into the trash can and then take his empty tray over to the window. It seems like such a routine thing to go through a cafeteria line, but there are actually quite a few steps involved and for a neuroatypical child, remembering all of those steps and being able to follow through can be overwhelming, especially when you add in the bustle and noise of a hundred other children. Yet, he does extremely well at it all. I think that the same would be true in the classroom.
• He wants to go to Kindergarten.

So, you see, there are factors to consider on both sides, and while it may look like I have decided for Kindergarten, I am still not 100% sure about it. I'd say I'm probably about 75% sure about it at this point.

Now, as to the part I mentioned above about regretting a child not starting early. I regret not having Cephas tested to enter Kindergarten at four. I just didn't know it was an option. When he started Academy (the K4 class at his private preschool), he was on the same academic level as most beginning Kindergartners. He was beginning to read, knew his numbers, shapes, colors. He had already had a year of preschool at age three, so he was used to work time, lining up, following rules, cooperating with others, separation from family during the day, etc.

But we didn't. We enrolled him in Academy because he was four and a child had to be five by October 15th to enroll in Kindergarten. Cephas wouldn't turn five until January. All was fine and dandy that whole year.

Then he enrolled in Kindergarten. And by the beginning of the Kindergarten year, he was reading on a first grade level, he had figured out not only addition and subtraction, but had mastered multiplication by 2's, 3's, 4's and 5's by simply playing with the numbers in his mind.

We were riding in the car one day and he told me, "Mom! If you have two and then you have two more, then it's four and then two more is six. Then eight and then ten." And I told him that yes, he was right. He thought about it a little bit and then said, "So, if I have two of something and you have two of something and Koren has two of something and Grandma has two and Grandpa has two, then that makes ten!" Again, I confirmed he was correct and told him, "That's right. If there are five people who each have a set of two items, that makes ten items total." He thought about that a little bit longer and then applied the same concept to three items, then to four items, then to five items, so on and so forth until he was satisfied with his new knowledge.

Then he began skip-counting by two until he reached one hundred. Then he did it by threes, then by fours and then by fives. So before my son had ever even started Kindergarten, he knew 1x1 up to 1x100, 2x1 up to 2x50, 3x1 up to 3x34 (because 3x33 didn't get to 100 and he wanted to get to 100), 4x1 up to 4x25, and 5x1 up to 5x20. He KNEW it, had it memorized.

So he was advanced. By a lot. I tried to inform his teacher but got the "Oh, every parent thinks their child is the smartest child in the world" attitude about it. So I decided to let her discover it for herself. She quickly did. But she didn't do anything to try to help him keep advancing. Kindergarten is a leveling grade. The kids who need to catch up to grade level are the ones that get the most effort put into them. The ones that already know the information get to help the teachers and be a good peer model.

By the end of Kindergarten, Cephas was wholly unchallenged and had grown bored with the whole process. He didn't have to try at school and while we continued a process called "After Schooling" (advancing through activities and interests after school) he just didn't really care much for school. In the middle of first grade, the academics caught up to where he was, but he had already stopped trying in school. By the end of first grade, he was no longer even at grade level for reading. It was such a struggle to get him to try in school. From that point on, until this year (in fifth grade), he has not been reading at grade level. He is now thankfully.

But I really feel that all of this could have been avoided by simply having him tested to enter Kindergarten early. I really and truly believe that. And if there is a chance that I am right about it, why wouldn't I want to do the same for Jeriah? Therefore, the dilemma.

Cephas is the child that we think may end up with an Aspberger's Syndrome diagnosis. He has had an issue with social skills since Kindergarten but we have always been able to somewhat manage them. Now, that just really isn't the case anymore.

To have him diagnosed with Aspberger's would honestly be a huge relief. Then we would know that, yes, this is why he does this or that or whatever. And more importantly, he would know that was why as well. If not Aspberger's, then maybe we could just gain additional coping strategies for him and for us as well. It is devastating to him right now. He tries so hard but he has such a lack of impulse control (always has, actually) and just cannot seem to do/remember/follow through on a myriad of other things that his classmates seem to have no problem with.

On Friday, when I talked to Cephas' teacher and gave her the questionnaire from the behavioral psychologist's office, she took it with a smile and said, "I know exactly what this is and yes, I would be most happy to fill this out for you. When do you need it back?" That tells me something as well.

Well, that ended up being a bit more lengthy than my reply to Gail's comment but not by much. What do you think? What would you do if the decision about Jeriah's classroom next year was your decision to make? Don't worry, our decision is not based on your comment but maybe you have a viewpoint that we haven't considered.

Super busy-ness

I have come by the blog EVERY single day and even though I have often thought about whipping up a blog post, I just didn't. I journal off of the computer, although that is a different sort of thing than what I write about online. But regardless, I love blogging and I miss doing it regularly

I had mentioned that Jeriah had some changes happen at school, so I am going to share about that and then move on to another (semi-)related topic and that is some of the things that we are going through with Cephas. You will see in the end how the two tie (loosely) together.

So to start with, when Jeriah was 19 months old, he was evaluated by our school district's team of experts (a doctor, a speech/language pathologist, an occupational therapist, a physical therapist, and a few other professionals) and they determined that he had PDD-NOS, Pervasive Developmental Delay, Not Otherwise Specified, which is on the Autism Spectrum. We began home-based schooling at that point in time, working with him on language development (he'd had words but "lost" them) and on gross and fine motor skills (He had just started walking the day before his evaluation with the team). We worked with his texture issues and his food intolerances/sensitivities. He had more specialist doctors than the other five of us in our family combined.

Last year (2010-2011 school year), he started school-based, well, schooling. He attended preschool five days a week for half days, then due to some issues, we ended up reducing it down to only 3 days a week. His development really progressed during this process. This year, (2011-2012 school year), he started a new school since we moved over the summer. He has been attending half-days of school, five days a week.
Then in February, we met with his "team" for his MDT meeting. They were talking about the progress he has made this year, which has been incredible. They were setting up his evaluations to see if he still qualified for Special Education and to set up all of the information that they needed for his IEP meeting, which was to happen at the end of the month.

The last day of February, we had a "home visit" with his classroom teacher. I say "home visit" because the visit actually took place at school, instead of at our home (the way that it is generally done), because his teacher is pregnant and has severe allergies and dogs are one of them. We have three dogs. However, Miss C is not able to take her allergy medicine during pregnancy so therefore, home visit at school.
Jeriah, BC (a little guy I take care of here and there) and I met with Miss C for the visit and she told me that Jeriah's testing had come back and that she thought he would probably be dismissed from the Special Education program. Also, we had discussed our options for him for next school year. You see, where we live, the school district has changed the guidelines for Kindergarten. Ever since I was a child, the cut-off date for Kindergarten admission was "5 years by October 15th of the current school year" so a child could enter Kindergarten at age 4, provided that they would turn 5 by October 15th.

Oralee is in Kindergarten right now. Before they had changed the guidelines, we had figured that Jeriah would be just one grade behind her all through school. Then they changed up the guideline and so we had planned on there being a year between the two of them in school. Jeriah was going to attend the preschool program for one more year.

Then, we met for his IEP. And he was released from the program. His IQ testing had all come back at average or above average for his age. His verbal skills are great, his Kindergarten curriculum skills are great (in fact, he's at grade level right now for Kindergarten academics for where Kindergarten is RIGHT NOW in the school year) but he still has his "Jeriah Quirks" as his teacher calls them. They are little things that he does that is just a little bit "off". Mostly, they are social things. He scripts, for one thing. Some of what he says makes sense and is said in context, but the manner in which he says it is scripted. For instance, he will "test" someone else's knowledge (repetitively - which in itself is a quirk) and when they give him a correct answer, he will say "You have the right answer!" Not a big deal, right? The inflection and intonation of his sentence is the exact same every time.

Earlier this year, when Jeriah's first semi-regular non-family babysitter was watching him, she was telling me of an interaction that Jeriah had with her husband. At the end of the conversation, she told me, "Jeriah told B that he correct," and without even thinking about it, I said, "You have the right answer!" with Jeriah's practiced intonation and inflection. She stopped and said, "Oh my gosh! That's exactly what he said! And EXACTLY how he said it! How did you know that?" It's just Jeriah. Anyone who has spent time with him knows some of his scripting.

If you think about the old Taco Bell commercials and the little chihuahua who would say, "Yo quiero Taco Bell" we all can repeat it. Now, imagine if EVERY single time you went to Taco Bell (and let's say you eat there for lunch two or three times a week), you walk in and say, "Yo quiero Taco Bell" in the same tone and with the same inflection as the chihuahua. That would be very much like Jeriah. Correct timing for a phrase but always the same exact phrase, said the same exact way. And that is scripting. Which, as I said, is just ONE of Jeriah's "quirks".

So anyhow, he was released from Special Education and is now attending the same preschool class as before, just sans IEP. He is now one of the "peer models" instead of the one needing the peer model. He still has his social issues (won't generally initiate contact with another child, prefers to parallel play with other children, has developing problem-solving skills when it comes to disagreements with others, and a few other things) but his academic skills are out of this world!

In fact, at the beginning of the year, Miss C made up these little progress books in which she would "test" each student throughout the year and record their progress. It had numbers listed 1-10, kept track of how far a child could rote count, how far they could count with one-to-one correspondence, which letters of the alphabet they knew (lowercase and uppercase), which shapes and colors they knew. Well, Jeriah knew all of his numbers 1-10 (and actually could recognize numbers up to 100), could rote count and could count with one-to-one correspondence to 16 on both (he missed 17 both times and she had to stop him, although he wanted to keep going), knew most of the letters (uppercase and lowercase both!) except for five of them I think, and knew all of the colors and shapes Miss C tested him on.

So, the second time we met, she skipped the numbers portion (although we played Chutes and Ladders and he had a great chance of showing off his number recognition skills), and she had tested him on letter sounds (because he had mastered the "missing" letters shortly after his previous testing) and had tested him on other shapes than the typical preschool level shapes. Things like oval, crescent, hexagon, pentagon, octagon and rhombus (to name a few). By the third meeting, the "testing progress" book was a moot point. Other than his cutting skills, which I am honestly just fine that he doesn't have great scissor skills. :) Personal preference.

So, now we are in the unique place where we can have him attend preschool one more year, as would follow guidelines. Or we can have him tested to enter kindergarten a year early. He would have been one of the youngest with the old guideline, he will be one of the oldest following the new guideline.
We reserved his place in preschool for next year and are setting up a time for him to be tested into Kindergarten for next year. We have the option of not placing him in Kindergarten even if he tests into it.
You know how parenting is an absolute trial and error experience and you generally learn things from one kid to the next? Well, Jeriah is our fourth and last. And I'm STILL learning. Some of what I am learning is all new to me because of his PDD-NOS.

Since he no longer qualifies for Special Education services and coordination, we will be starting to see a behavioral psychologist at a group that specializes in ASD. We found this group because of Cephas and some of the issues we have been having with him.

I have honestly debated on whether or not to share about this but have decided to go ahead and share. You see, Cephas has some issues with staying on task at school, following directions, things all the way up to outright defiance. There are times when I will tell him to stop doing something and he will continue to do it and then proceed to tell me why he is continuing to do it. And while I appreciate his independent thinking, sometimes it is more important to just be able to obey a simple directive immediately. And if it were once in awhile, it wouldn't be such an issue, but it isn't. It is a several-times-a-day kind of thing.

So we went to see someone in this office and while we were there, Cephas DID a few of the things/behaviors/attitudes that we were there to discuss. Now, I know it may sound bad but I was secretly quite relieved that he did that. Just because it gave some of my concerns about him more validity, if that makes sense. I think we may end up looking at an Aspberger's diagnosis down the line. I can't say for sure though, which is part of the reason that we are there. To see if there is something that we can do to help him, or at the very least come up with strategies to help him be successful.

So, there you have it. Jeriah's exciting school thing and Cephas's behavior thing. Slowly but surely, I am going to get caught up!

Home Visit

Yesterday was our "home visit" with Jeriah's classroom teacher, Miss Cari. I put home visit in parentheses because it wasn't held at home. It was held at the school in the hallway outside of Jeriah's classroom.

We worked on a set of Opposites puzzles with Jeriah. He understood which pictures went together to make the puzzle but had some difficulty deciding what each picture was or being able to verbalize "The opposite of hot is cold." It is something that we are going to continue to work on though. We had the opportunity to share with Miss Cari our pictures from when we made homemade pizza for our movie night and some from Halloween and we told her about Jeriah and Oralee singing karaoke way late into the night. It was a great visit!

We set mini goals at each home visit. One for Jeriah and one for us as parents. Our goal for Jeriah was to continue working on opposites until he is able to identify and vocalize what the opposites are. Our goal as parents was to establish a bedtime routine for Jeriah. He is our most difficult child to get to sleep. It used to be that Cephas was our most difficult but Jeriah has clearly taken over that position. We also have the option of meeting with the school psychologist to work on it as well, but I passed on that. I'd rather try to get it all settled myself and if there isn't significant progress in the next month when we have our next visit, then I will request her input. But until then, I am going to do what I can to establish a good bedtime routine for Jeriah.

Jeriah took a photograph of his Opposites puzzles that he put together today. We will be adding this to his Family Literacy Portfolio that we turn in at the end of the year.