Next Steps (X-post from Fat Chick Biking)

I posted this on my Fat Chick Biking blog as well...

I'm a mom, first and foremost. And as a mom, I worry about my kids. It's kind of my job, along with making sure they are safe, happy and taken care of. But when your kid has issues like mine has issues, that worry can kick your ass.

My kid is severely ADHD. He's also diagnosed ODD (Oppositional Defiant Disorder) and SID (Sensory Integration Disorder, aka SPD (Sensory Processing Disorder). ODD is very commonly found as a comorbid diagnosis with ADHD. In my opinion, it's also a very harmful diagnosis to acquire, or at least it can be.

Why, you ask, is ODD a harmful diagnosis? Just read the two major players in the name of the disorder. OPPOSITIONAL. DEFIANT. Pretty negative way to describe someone, isn't it? Do you feel sympathetic to someone who is labeled oppositional and defiant? Does it make you want to help them? Or do you find yourself looking at these oppositional and defiant people as troublemakers and people who are going to cause problems for you?

Long ago, when I first started this journey with my child of trying to help him with his issues, I decided that whatever labels were given to him were fine by me...as long as they help him get the services and assistance he needs. Read that again. As long as they help him get the services and assistance he needs. What I've found is that a diagnosis of Oppositional Defiant Disorder gets him nothing but looked upon as someone who is, by definition, oppositional and defiant, and by extension, a troublemaker and someone upon whom many, many things can be blamed.

Here is the definition of Oppositional Defiant Disorder:

* Actively does not follow adults' requests
* Angry and resentful of others
* Argues with adults
* Blames others for own mistakes
* Has few or no friends or has lost friends
* Is in constant trouble in school
* Loses temper
* Spiteful or seeks revenge
* Touchy or easily annoyed

Am I saying that my child does none of these things? No, clearly he does them or he would not have qualified for this diagnosis 5 years ago. But as a layperson, teacher or someone otherwise involved in my child's life in a non-medical, non-psychological way, having a child labeled ODD is harmful. Humans as a rule want to put people into metaphorical boxes so that we understand how each person is "supposed" to act. When you expect someone to act a certain way, you start looking at their behavior through that lens...and it can very easily become habit to look for the negatives, or even the not-good-enoughs, instead of seeing the efforts that person makes, and even the good behaviors, outside of the label you gave them.

Right now, my child is facing a diagnosis of depression, an adjustment disorder w/depression, and maybe an anxiety disorder...in addition to ADHD, ODD and SID. He's 9. I am worried for my child.

He doesn't want to open up and talk about his peer relationships with his therapist, the person who did the extensive testing back in March, or even with me. That's new...and it's weird. So says me...and the professionals. Hence, the adjustment disorder. He is clearly going through some emotional trauma and feels unsafe or upset talking about his friends, or lack thereof. What was the impetus for this? I can guess it was something that was fairly devastating to him that happened a school a while back. I could be wrong.

I love my kid. My kid is a pain in the ass. My kid is a stellar little guy with a HUGE heart and a great smile. He has a special ability to piss people off. I'm glad for the person he is, and I sincerely hope that his trials at such an early age will make him stronger, not broken.

The next step is a meeting with all professionals involved in his treatment so we can brainstorm and come up with viable treatment options, be they medical, pharmacological, or therapeutic in nature. In addition, at the end of April, our wonderful psychologist will be accompanying my husband and I to an IEP review/revision meeting at the school to talk about the results of the testing done in March, and what the resulting changes in his IEP will be. After that? No idea...I just know that we will keep plugging along, trying to help him as much as we can.

Testing testing...123...

There are so many things I struggle with in regard to M and his issues. The biggest, I think, is getting him to do what I ask WHEN I ask him to do it. I really pushes my buttons when I don't get an immediate response from him after a direction has been given. It makes me...angry. I don't want to be angry at my kid, but it's almost an ingrained response at this point.

I'm tired of threatening consequences or counting to get him to do what we want. I'm tired of the tears and yelling at night when he doesn't act like my husband wants him to, or as mentioned above, do what he has been asked to do immediately. For us, it's no big deal to make these transitions. For M, clearly, it's a huge effort.

I'm not the parent I want to be. And honestly, I'm not sure how to be that parent. I read all these books, and I understand what they are saying, but I don't know how to put these things into practice. When we're in the moment, how the hell am I supposed to put these ideas into play?

I'm sick of this life that we lead right now. I want to change it. I just don't know how.

And something else I HAVE to get off my chest is this: "You're making me mad"...how often do we say that to people, as if it's their fault that we are choosing to get angry. Yes, I believe that becoming angry about something is a choice. Nobody can make you do something you don't want to do, and that includes getting angry. So when I hear my husband say to my kid "You are making me angry" or "your behavior is making me angry" I want to say "NO! Stop! Listen to yourself. He can't make you angry unless you let him. So don't let him." But who am I to say all that when I choose to become angry too? And even mimic the words he uses.

There's so much going on lately, and I'm just overwhelmed with it. We just finished 3 sessions of psychological/education testing with M, to the tune of $1500, not covered by insurance. Thank God for flex benefits. Hubs and I go to see the psychologist who did the testing in a couple weeks for the interpretive review of her results. Until then, I'm left oscillating between wanting there to be more wrong with my kid than ADHD so that we can make sense of all these behaviors we're seeing at home and school, and wanting there to be nothing more wrong than the severe ADHD that was dx'd 5 years ago. I feel like a terrible parent for even harboring the desire for there to be more going on than "simple" ADHD.

I've been talking with our therapist for a few weeks about the possibility that M is bipolar, like me. I've tried charting his moods, but they are up and down so quickly that it's difficult. Looking closely at his behavior, I can definitely see bipolar-like behaviors clearly; but they can also be so many other things that have nothing to do with bipolar. It's fucking frustrating that I can't figure this out.

I feel like my kid is this gigantic knot of string that I have to unravel...and I'm having a hell of a time doing it. I need to figure this out. I need for my kid to better at school, to feel successful at something, somewhere. It's hard to not let this bring me down, but it does...often.

Having to wait 2 weeks to know whether there is or isn't something else going on with my is going to be difficult.

On another note, we got the sensory diet a few weeks ago and I haven't done one damn bit of it. There is just so much other stuff going on right now...this is another thing I'm not sure how to implement. I feel overwhelmed by it all. But I also know I'm doing my kid a disservice...if he'll even participate in OT stuff outside of the OT's office. There's no telling whether he'd do what I ask at all...but I should try.

I'll stop whining now...but there's so much more to this than I can even remember right this second. Don't be surprised if I come back for another round of venting.

Increase in Sensory Behaviors

We're seeing an increase in sensory behaviors with M. I've noticed that he's chewing on things again, and he hasn't done that in a long time. The other thing we're seeing is him wanting to sit inside laundry baskets and these big blue buckets we have. Small spaces seem to make him feel secure. I'm not sure if the increase is due to anxiety from issues at school, or if we are simply seeing the reemergence of old behaviors.

I did start doing the "hot dog" game with M, during which he wraps himself tightly in a blanket and then I do a deep pressure rub over his body. It seems to calm him immensely, and I *think* helps him go to sleep.

I'm about a 1/4 of the way done with his weighted lap blanket. It feels wonderful, but I'm not sure it's going to be heavy enough. I have to order more rings as I didn't order enough to begin with.

I'm feeling really frustrated this afternoon, after reading a note from M's teacher saying that his behavior was "purposeful." How does she know that? She doesn't have PhD or MD or even Social Worker or Therapist after her name, so I wish she'd stop making assumptions based on other more "normal" 4th graders.

ADHD and comorbidity

I just watched a really informative lecture by Dr. Russell A. Barkley, who is one of the foremost researchers in the field of ADHD. You can find the lecture here.

If your child has ADHD, ODD or other disorders usually associated with ADHD, this lecture will be very valuable for you.

Everything is going to be ok, I have a PLAN!

Oh yes...yes I do! :D

Today I have a lot to get done:
1. make earrings for my Bike Part Jewelry business to send to ArtMart in Boulder, CO
2. take pictures of the new line of metal and chain maille scrapbooking embellishments I need to add to the webstore (HandmadecreationsbyLynn); and add them to be available for purchase
3. laundry...but I have a plan! I bought the boys their own small laundry baskets the other day so they can start taking up their own laundry after I fold it. This will be a multi-step process. First they will get used to being responsible for taking their baskets full of their laundry upstairs and I or hubs will put the clothes away; then they will take up the baskets AND put the laundry away, with supervision; THEN they can do it all themselves. I'm banking on about 3 weeks total, but we shall see
4. I need to update my Bike Part Jewelry website with the new jewelry (both with and without bicycle parts) I've created recently
5. I need to rearrange my chain maille rings
6. I have GOT to break and clean some bicycle chains for the jewelry business...breaking first, then stick them in the tumbler for cleaning
7. I need to work on M's weighted lap blanket. I'm half way through the 11th row of rings (it's stainless steel rings in European 4 in1 chainmaille pattern). It's taking longer than I thought, but I had forgotten how hard it is to work with stainless steel rings when you don't do it on a daily basis. Those things are tough! But it's going to be AWESOME when it's finished
8. I want to figure out how to make M a body sox, or maybe I'll just buy one for him
9. I need to get my head together with all the suggestions the OT made for school and home accommodations for M yesterday
10. Finally, I must make J (M's younger brother) a picture schedule so he can get everything into his backpack BEFORE I say it's time to leave...we had an issue over a water bottle this morning, and he ended up not being able to take it because he refused to fill it up at school and we didn't have time to fill it up at home

It's going to be a busy day, but I think I'm up to the task.

Lessons, continued

So if you read this post, you know that we had some issues earlier this week. Well, not surprisingly, there were more issues. And I think I was on the verge of homeschooling my child because of them.

Players in the game:
Miss A - regular ed teacher
Ms. B - resource teacher
Ms. C - principal
M - my kid

Let me share the emails with you:
The next email was from the resource teacher (Ms. B), who helps M with writing, calming down, social skills type stuff, etc. This was from her on 2/1/11:

"Thank you for the info regarding M current behaviors.  He was not himself this morning in my writing class.  He entered the room poorly and needed to be redirected back to the door to enter appropriately, which he did after several directives from me.  Additionally, he was trying to be verbally aggressive with another child, grade 4 student.  He began with the pencil up the sleeve, pretending it is a gun, which I stopped immediately. I walked him to gym this morning after class and he said in a round about way, not totally convincing to me, he will improve with stopping and thinking about actions and consequences."

From the regular ed teacher on 2/1/11:
"M also had a difficult lunch time.  He finally was asked by the students to leave the table and sit somewhere else.  I spoke to everyone involved and the students who asked M to sit somewhere else admitted they did something wrong.  They also said they were tired of the "bad words" M says and the things he does annoys them.  M admitted he did say bad words and his behavior choices are not good ones.  The fourth grade students are maturing and they notice the behavior of others in the class.  They were able to explain to me exactly why they acted like they did. They agreed to give M another chance to show he can make good behavior choices.  M and I had a private talk and I said he needed to change his choices if he wanted to have friends in the class. He agreed to try."

Then I emailed the teacher and asked what the other kids did wrong, just to clarify, and was told that they should not have asked my son to leave the table.

On to 2/2/11:
I got a note in M's agenda saying there was more trouble at lunch today, so I emailed and asked what had happened. Here's the email:


"Hi M's Mother,

I was just sitting down to email you about what happened today, both at lunch and after, in the room.  Yesterday, I spoke with all the boys in my class about an incident reported by the person on lunch duty.  I already emailed you about this yesterday.  I explained to the boys that they were to give M another chance sitting with them at lunch.  I explained to M that he had one more chance to show he could sit appropriately with the other students.  If he did not make good choices, I would choose a seat for him.

Today, at recess, a boy came to me and said M was touching his hat and him during lunch.  This boy said he asked M to stop several times, but M did not stop.  The boy did not ask M to leave the table, but he said he wanted me to know.  When we came back into the room, I spoke with M and then called the other boy over to speak with us also.  M did say he was touching the boy.  He did admit the boy asked him to stop.  M then told me another boy was also touching this student.  So I called up the third boy.  Apparently the other two boys are friends and they tease each other.  M seems to think this means he can just join in and do the same behavior.  I tried to tell M that the situation is different because he does not have a friendship with the boy he was touching, therefore his touching was annoying the other student.

At this point, M "shut down" and said he did not want to talk about it anymore.  I sent the other two boys to the their seats.  M said he was mad and wanted to go to Mrs. B's room to calm down.  I told him that he could use the rocking chair, or he could pick any place in the room he wanted to sit to calm down.  He told me he wanted to go to Mrs. B and could not calm down in my room saying, "I will explode."  I waited a few seconds and told him he could not leave the room, but he could choose anywhere to calm down.  That is when he said if he stayed in the room, "I will just annoy the kids around me." 

I told him to choose a place.  After giving him those directions, I turned around, walked away, and started to teach a lesson.

A few minutes later, I turned back around.  M was no longer in the room.  Then the phone rang, and Mrs. B said M was with her. Then, Mrs. B walked M back to my class.  Please know, M did not ask permission to leave my room--he just walked out, and I did not know where he was.

  

I spoke with M at the end of the day--about two hours later--and he said that I have not been giving him his breaks with Mrs. B.  I asked him to explain what he meant by "breaks".  He said that "my mom told me that I am supposed to have breaks with Mrs. B, and it is written down in my plan."  He was insistent that he was supposed to be able to take breaks with Mrs. B. I explained the only plan I knew about was written by Mrs. C, Mrs B, his mom, dad, and me, and that it did not say he could have breaks with Mrs. B. 

That is how M and I left it.

I spoke with Mrs. B and leaving a class with or without permission to go to the CCR room for breaks is not in his BIP.  Mrs. B and I plan to meet with M tomorrow to talk with him about what happened, and to review the BIP with him. 

I know we have a BIP review meeting scheduled, so we can discuss this at the meeting.  In the meantime, we will continue to work with M to help him make good choices."

Ok, first of all, my kid DID ask to go to Mrs. B's room to calm down. The teacher said no. 

After I was able to calm down and stop cursing at how asinine this whole situation was, I wrote this email back to the teachers (and principal) involved:

"Hi Miss A (regular ed teacher),

Thank you for the email.

I think there is a lot more going on here than what may be obvious. I definitely think we need to discuss the events of the past couple of days and perhaps put them in perspective. I’m not sure waiting until 2/18 is going to be a good plan – that’s over 2 weeks from now and I think there are things that need to be talked about immediately. I’d much prefer to talk face to face as opposed to email, if we can arrange it. I’m not sure who needs to be involved – likely at least you and Ms. B, myself and possibly my husband if he can arrange his schedule.

For the record, I did not tell M (my kid) that his plan states that he should get breaks in Ms. B’s room. What I said to him was that I thought that when he had testing, he was supposed to get frequent breaks and have a smaller testing group. Clearly that is not what he heard. I did, however, look in the IEP and I see that particular accommodation is only for EOG testing? I thought it was for all testing.

I’d like to understand better why you and Ms. B will be reviewing his BIP with him tomorrow. My opinion is that it has been pointed out to him very bluntly over the past 2 days that he is neither accepted by his classmates, nor very welcome anymore, due to his behavior in class. I think that reinforcing these 2 days by telling him that he requires all these things to keep him in line is going to be more hurtful than helpful. His schedule these past 2 days has been out of whack due to the benchmark testing; and he has been dealing with people basically telling him that they don’t want him around…that’s a lot for a 9 year old with his disabilities to handle. Again, just my opinion. In fact, I’d rather it not be discussed with him until we have all talked and are on the same page. It is interesting to note that the past 3 mornings at home have been good. We started a more scheduled morning at home on Monday and the mornings have been much easier for all of us.

Tomorrow will also be an off-schedule day, as he has his regular 2 appointments; thus he won’t get to school until 12:15p.

Thank you again for the detailed email. I look forward to working with you to help M improve at school."

And then the last email I got regarding this whole f'd up situation, from Ms. B (resource teacher):

"

Good Morning Mrs. M's Mom,

Thank you for your email regarding the concerns from this week with M peer relations.  Let's move our BIP review date up to either Mon., Feb 7 or Thurs. Feb. 10 at 8:15 so we can develop a plan to support him with his current needs.  I will shift gears with him during our Thursday and Friday meeting times.  We will begin to work on social skills-applying social problem solving to the social problems M is currently encountering and integrate safe ways to release anger/calm down before dealing with the problem. 

Thank you for your insight and communication!  Look forward to hearing back from you."
 

I am so unbelievably pissed that my son was treated this way. Have they truly got no idea how much this affects him? We went to see his therapist yesterday, and when she called me in to update me after she had done the session with him, she told me she knows there's something going on with him, but that he won't talk about it. I gave her a copy of all the emails sent back and forth and also some notes that I had written down. We are going to talk about it on Saturday.

This all just goes to show me that the public school system where I live is woefully inept at not only teaching, but probably more importantly, understanding kids who don't fit the norm. They have no idea what to do with these children, little to no training on how to deal with this, and they are probably stretched too thin with all the other things they have to take care of. It's sad.

I was talking to another mother yesterday while we were waiting for our kids to be done with their respective appointments at the OT. I told her that most people fail to understand that kids with ADHD are not just "hyper pains in the ass." There's so much more to ADHD than just being hyper. And then add to that sensory issues....and, well, you see what happens when things get bad.

I've decided to educate people, whether they want to be educated or not. I don't give a shit anymore. I'm making copies of information from a few books I have that are geared toward teaching kids with ADHD and I'm giving it to all parties involved at our meeting next week. If that makes me pushy and obnoxious, then so be it. I've had it.

 

Fidgets I've Made

I decided to go ahead and share the 2 fidgets I made for M...though one of them gets used by almost everyone in the house because it FEELS SO GOOD!!! :D The other one I just finished today.

The first one I made was actually a sample square for the weighted blanket I'm making him. This is the one that everyone loves. It's made from stainless steel rings in European 4 in 1 chain maille pattern. The rings are mostly 18g 3/16", but there are some 20g 3/16" at either edge to cut down a little on weight. It's about 4" x 2.75" not spread out. Spread out, at the widest, it's about 4" x 3.5". The weight on it is 2.2oz. What's so nice about it is that it drapes over the hand, between the fingers, wherever and feels almost liquid. It also has a beautiful jingling sound, if you like that sort of thing. One cool thing about this one is that if you grab it between your thumb and a finger, you can turn the individual rings around.

Here are some pictures of it:

The second fidget is made from 18g 5/32" stainless steel rings and 18g 3/16" black EPDM rubber rings. I made this one into a tube so that it would fit over the finger of a child or small adult. It's lighter than the large fidget, weighing in at .8 oz. Laying flat, it's about 1.75" x 1". Here are pictures of it:

Just thought I'd share. If you want to try one out, let me know. I want to see what people think and if there is a viable market for chainmaille fidgets.

Lessons

Sometimes I truly have no idea what to do about M and school. Yesterday when it was time for homework, I got his agenda out and saw a note written by the teacher that said something to effect that M had discovered that other children don't want to sit next to him in class because he's disruptive.

Ok....so I asked M what happened. At first he didn't want to talk about; he just wanted to get his homework done so he could go outside and play. But I kept pushing and he finally told me that the teacher had decided to change the seating arrangement in class and that everyone got to pick who they wanted to sit with...and nobody wanted to sit with him. I asked him why nobody wanted to sit with him and he just shrugged and said he didn't want to talk about it.

A little later, I asked him again what had happened in class that nobody wanted to sit with him. He said that he asked 1 kid and the kid didn't want to sit with him because he's distracting, but he thought there was another kid who might want to sit with him, but that kid wasn't in the classroom when all this was happening.

I also asked him how this made him feel. He said "not so good," "bad" and "embarrassed in class." So I wrote a quick email to the teacher saying "I wanted to let you know about something that happened when M got home today. I saw the note in his agenda about moving seats and asked him about it. At first he didn’t want to talk about it, but after a few minutes, he told me what happened. According to him, the children were given the opportunity to change seats today and to sit next to whomever they wished. Apparently nobody wanted to sit next to him. He felt embarrassed, left out and very bad about himself. I just thought you should know what he said."

The response back I got was "M and I talked about this in class.  The students told me quietly that they were distracted when they sit next to M because he fools and jokes during work time.  M said he was the only one who could change students opinions of him.  This is a learning opportunity for M to realize that his actions affect others not just himself.  He has a place to sit.  Let's work with M to make choices that encourage students to want to work with him."

I really don't know what to think about this. I'm horrified that it happened, of course. But am I supposed to let school teach my kids lessons like this? This just screams lack of forethought to me. And worse, lack of understanding of what ADHD and SID are in relation to a child being able to absolutely control himself like his classmates. 

The bottom line is that my kid is different. He has a disability. You can't see it, but it's there and it effects everything in his life, from school to friends to home. I don't think he deserved to learn a lesson in such a brusque and rude manner. 

I just can't imagine what she was thinking....or whether she was thinking; that may be the better question.

Ways to Focus Right Now: Harnessing the Power of ADHD Fidgeting | ADDitude - Attention Deficit Information & Resources

Ways to Focus Right Now: Harnessing the Power of ADHD Fidgeting | ADDitude - Attention Deficit Information & Resources\

I was just looking around on the ADDitude website and came across the above article about using fidgets to assist in focus. This is a sensory oriented idea.

In fact, remember the blanket I was talking about in my last post? I started it and found that a small patch of stainless steel rings woven into a particular pattern makes a FANTASTIC fidget. :D

Weighted Blankets - my own twist on the design

So weighted blankets can be very good for kids with sensory disorders, especially those who like that deep pressure sensation, like my kid.

Since I make chain maille, I've had this idea tickling my head to make him a blanket out of stainless steel rings. The pattern I'm using is European 4 in1, which is an amazing feeling pattern. It actually feels good against the skin, and the 18g 3/16" rings I'm using will be just heavy enough to give him the weight he craves. It's not going to be a huge blanket, but I'd like to make it big enough for him to sleep under, with another blanket between him and the steel blanket, most likely.

I was reading today about weighted comforters and thought that instead of spending $150 to buy one, I could spend less and make him one! I might even put a red anodized aluminum inlay in it of his first initial. Not only would that add to the cool factor, it would also make the blanket a bit lighter if it's getting to be on the heavy side.

I'm in the process of ordering more rings for the blanket and for my business(es), so it will be a couple of weeks before I can get a good start on it. I'll go ahead and use up the rings I have, but there aren't many.

I'm kind of excited about this idea! Any comments are welcome on how you think this will work/not work.