Official medical diagnosis means more acronyms entering our lives

   Yesterday was Nixon's big appointment for a second opinion by our insurance company. This has been a long time coming and I really pushed to get this appointment. The original diagnosis was only ADHD by our insurance company, which was met with a quick push for medication.
   This appointment was a meeting with a board of 6 people who were going to evaluate Nixon's behaviors/speech/motor skills/school reports plus his GARS and other questionnaires I was asked to complete and bring to the appointment.

    We arrived 30 minutes later, in spite of leaving more than 90 minutes before our scheduled appointment time. Traffic in our area sucks! There were at least 3 different traffic accidents and backups that led to our late arrival. Thankfully, I called and gave the office a head's up so they were aware and prepared when we arrived. Nixon was pretty good even when he got bored, we did some math questions in the car.
 
    Without going into the long almost 2 hours of the evaluation and results process, the gist is: these medical professionals agreed with the school's findings that Nixon does have ASD/ADHD and SPD. He is highly hyper active and it's making any other disability hard to address. At one point, in a 2 minute period, Nixon got up/fidgeted/changed the subject over 15 times. While being asked questions about emotions, he was asked if he's ever sad. Nixon said "Well, sometimes I'm sad when no one plays with me at center time" (Center time is learning-based play centers in his classroom, he's never told me before that he's sometimes left without a partner or team during center time. That was difficult to hear and kind of put everything in perspective for me.)
   With the official medical diagnosis Nixon is now eligible for: OT (occupational therapy), ST (speech therapy) and ABA (applied behavioral analysis), all which will be covered by our insurance company! Plus we have a doctor's recommendation for a choice in schools when we meet with the County Central IEP Board in a couple weeks.

   You'd think that would be the end of the "good news" but it's not.
    This afternoon, Mac and I had a meeting with the Vice Principal regarding the recess incident from last week. I had requested to view video footage from the playground area, as the entire situation felt odd.
   Turns out, my gut feeling wasn't wrong.
   Mac asked to see a few minutes before the actual incident, which was cued up and didn't give any possible clue for Nixon's actions. As we watched the grainy, jumpy, tiny figures on the screen,  Mac and I started noticing things. The biggest one was Nixon was giving off non-verbal signals to the other child that he wanted to be left alone and the other child didn't respect those signals. Nixon put his arm out, straight at the child and the boy came at him. Nixon then dropped to the ground and basically turtled up (for lack of a better word),the boy then continued to stand over Nixon a few seconds before walking away. There's some discrepancy because to me it looked like Nixon may have been kicked by the boy, but neither Mac nor the Vice Principal could seem to see what I was looking at and said it may have been the boy turning to walk away. Either way, the next frame Nixon got up and went after the boy. The rest is history.
    After viewing this a few more times to be sure we all saw the same thing, the Vice Principal asked us to explain the non-verbal body language Mac and I were seeing Nixon displaying. She said she was going to show the other boy's mother (a teacher at the school) the video and explain the body language as we had explained to her, so she knows Nixon did not attack her son unprovoked. It's nice, but Mac's offer to sit down and speak with the other parent as well (prior to learning she was a teacher at the school) was rebuffed as "unnecessary" because this teacher "has worked with disabled children before and I'm sure she'll understand Nixon's particular case when I explain the video as you have", mind you all this took place with 3 adults less than 5 feet away and not one of them was aware of Nixon's nonverbal signals making me wonder how many of his other "major incidents" with other students had situations like this happening.

    I'm glad he wasn't suspended, because I'd have been more pissed off than I already was leaving that meeting room today. It seems, and thankfully today Mac was there to actually witness the bias, the school is so quick to paint Nixon as this bad, out-of-control child that no one even thinks to check to see if there was a valid reason for his actions. If I hadn't have followed my gut and asked to view the footage and Mac hadn't have asked to view more than the 15 seconds that was cued up for us, we wouldn't have the answers we have tonight.

Shoe shopping with Nixon

   Nixon's day yesterday was a 7 smiley face out of 8 day! The day's schedule wasn't normal because of a planned "crisis" drill. Nixon told me they get books and sit in a quiet room and read the books until they hear a loud voice call for them to come out of they hiding places. It sounded like it's well thought out and not very hectic, which for Nixon to be so calm during is saying a lot!
   He did get to help Miss J with the trash can in the lunch room and he was overjoyed about that!

   Nixon told me yesterday morning before school that his toes were all the way to the front of his sneakers and "I need smaller feet to fit my spider man shoes, Mom". My alternative of buying bigger shoes seemed to appease him and we made plans to go shopping Saturday morning for them.

    This morning we went to Target (he's familiar enough with Target that even on a weekend he can handle the crowds and not get too overwhelmed). We grabbed Starbucks, wondered around aimlessly and eventually made our way to the shoes. Nixon tried on 3 pairs of shoes. He was so happy to find another pair of light-up Spider man Velcro sneakers. I also got him to try on a pair of lace up sneakers and a pair of high-tops. He liked the lace up but refused to even stand up with the high-tops on because "they squeeze my whole foot top-to-bottom all weird", and I just let it go. Sometimes, that's all I can do. I'm not always going to understand how he explains something but it's important that I validate and respect his feelings.
    The shoe thing? That's SPD. Some textures/smells/tastes are very strong and overwhelming to Nixon. Apparently, high tops are now added to the list of things he doesn't like. He actually only agreed to try the sneakers on in the first place because he's never worn a pair of them before. He also really liked a pair of glittery gold slip-on shoes, but didn't want to look for them in his size.

Tuesday? Monday? Who can tell anymore...

    Yesterday was a snow day. There wasn't any real snow, but it was very icy and very dangerous. Snow day 4 of the 5 built into the school districts schedule.
    Because of Nixon's snow day he was able to go with me and take Mac to the airport for the second time. This time we did a curbside drop-off. Nixon was very fine with the drop-off. Nixon was great at home at dinner. He was fine at bedtime. In fact, he brought me the teddy bear Mac made for him (after he as supposed to be asleep) and said "Mommy, here. You can press the paw right here to listen to Daddy's voice if you miss him." I tell him that Capt Bearmerica is his bear and he says "I know, but Daddy didn't leave anything for you in case you miss him."

   I wake up and Nixon is in bed with me this morning.

   We had an easy morning this morning. Up, fed, dressed and out of the door with no issue this morning. Shocking! After we arrive at school, as I'm dropping him off with the teacher's aide I give her a heads up about Mac leaving yesterday, and I leave him at school. Hoping for the best.

   His first really great day in a couple weeks! It was a full day and he came home with 8 of 9 smiley faces! He spent only 10 minutes out of class.

   What some people may not know about children on the spectrum or with SPD is that, when these children get overwhelmed they may not want any kind of touch. Nixon has not ever told me to not touch him.

   Until tonight. 

   He came out from him bedroom, crying. He'd been in there and asleep for about an hour before this. I called him over and asked him what was wrong. He said "I can't find sleep." Usually, when he's upset about anything, he'll curl up on my lap and listen to my heart while he calms down. Tonight I try to get him comfortable and he pushes me away. I stop. While a part of me aches to comfort him, I need to do it on his terms. I ask him if he doesn't want to be touched. He tells me "no touching, Mom". I ask him if I can wipe his tears, which he agrees to. I get him calmed down and he asks to sleep in my bed, on Mac's side. I don't care, it's a bed big enough for the both of us, as long as he gets sleep. 

When Acronyms meet new places

   Part of every child's life is birthday parties. Neurological normal kids have no problem with these events and they love attending.

    Our lives, however, make it a little harder. There's knowing he's going to face overwhelming noises, have sensory overload from the sounds, more than likely at least one meltdown. Then we have to factor in that there will be limited routine and lots of chaos. While birthday parties are fun for most kids, for my little SPD, ASD, ADHD kiddo it can be exhausting.
    I don't try to avoid parties, Nixon's only had 2 invitations this school year and we've attended (or made plans to attend) them both. But it takes a lot of preparation, both for Nixon and me. I start by reminding him it'll be loud. I then let him know that he will have to let the birthday child open his presents, without Nixon's help. I have to let him know that we may eat first or play first, there's no real routine.
   The biggest thing I do for him is let him know that, at any time, he can ask me to leave or help him find a quiet corner. I also carry headphones in my purse, in case he just can't handle the noise. I try to make the car ride, to and from, as quiet as possible, allowing him to decompress immediately afterwards.

    For me, I make sure I have a BIG cup of coffee. I also pack my balls-of-steel because  I never know when I'll have to deal with an adult who doesn't understand Nixon's issues and tries to run his/her mouth. I've been lucky so far and never needed to use them, but with every event we go to, odds are eventually one day I'll need them.

In the beginning

   First an introduction:

   My name is Rea. I'm a mother to one awesome little boy, Nixon, he's 6-years old. I'm married to Mac, who retired from the Navy last June.

   Our life kind of changed in 2014. See, Nixon started Kindergarten and the issues that I'd been bringing up to our doctors since he was around 2, suddenly became larger and more urgent. Nixon was not adjusting to school, at all. He was the disruptive kid in class. His teacher called me on the first "preview" day of school. (It was a full school day, but only 1/3rd of the students attended. It was meant to give the kindergarten students an idea of what to expect when school started.) His teacher called to tell me Nixon sat on a table. And screamed at her. "NOOOOOOOOO!" when she changed the activity. I apologized and assured her I'd talk to him about it.
   When school started, the phone calls got more frequent. It was never anything like "he hurt a student" or "he's swearing", that was my consolation. But the calls were almost daily. I requested a meeting the first week of school. I got a meeting request a month later. After Nixon was suspended for a day. He had a giant meltdown and while no one was hurt, his actions did lead to the classroom being emptied of all students. He was throwing objects, not at anyone, but throwing them none-the-less.
   When the meeting happened, Mac and I both went to it. I went armed with an appointment with our doctor for a referral evaluation. A referral to have Nixon evaluated because I was coming to believe Nixon was on the autism spectrum. The meeting went well, except for his teacher who seemed to believe Nixon was an overly indulged only child.  

   The school requested to do their own tests, so that they can better help Nixon on an individual level.

    After all was said and done, and the test results reveled, our life changed. Nixon was found to be on the autism spectrum disorder (ASD), as well as have attention deficit hyperactivity disorder (ADHD) and also sensory processing disorder (SPD). With these diagnoses, the school started moving forward to develop an individualized education program (IEP).

   This blog is going to be an outlet for me, a progress tracking method of Nixon's behavior at school and a way to show life doesn't stop when the acronyms begin. It's a struggle, seeing you child defined by acronyms and it'd be easy to let those define him, but those acronyms are not all he is.