Halloween....we survived!

   Halloween is a dicey holiday for Nixon. He wants so badly to be a part of it, but he also can get super overwhelmed by the festivities. Years past we've gone trick-or-treating with him only to have him start crying and screaming at people. He will want a costume with a mask then refuse to wear the mask at all.

*The first year this happened he was Iron Man. When he refused the mask, I bought a black face paint crayon and drew a Tony Stark-inspired goatee on Nixon. He loved it and we got a bunch of compliments on the unique way I chose to handle his mask aversion.*

    Nixon's also very rule-oriented. If he's told something is a rule, once he gets it it's a rule for him and everyone around him, most cases. Before we went out last night, he was reminded to say "trick or treat" and "thank you", only take one piece of candy (when presented a bowl as a lot of the people did this last year) and to be polite to others around him when waiting at houses.
    At one house this year, he took his one piece of candy and was then offered a bag of pretzels from another bowl, at the same house. Nixon paused and was visibly bothered, thinking he now needed to choose between the candy he just chose and the bag of pretzels. I could see he was getting upset by the choice he preserved he had to make, and I gently told him it was okay he could have both. He said  many "thank you"s as we left when he realized he didn't have to choose!
    There were quite a few teens out, and they were typical teens out on Halloween: loud, rambunctious and pushy. Nixon was quite nervous around the groups of teens, he'd grip my hand really hard and get very close to me, but he never yelled/cried or got upset. He coped with them in a way he hadn't been able to in the past.

    At one house, Nixon was leaving when he saw a toddler drop a couple pieces of candy from their bucket. Nixon picked them up and waited for the toddler to come down the steps. Nixon then said "Here you dropped these" and tried putting them back in the little boy's bucket. The child kept walking towards his mother, dropping another piece of candy, which Nixon again picked up. He got frustrated and said "MOM, he won't stop moving so I can't give them back" and put the candy in my hand. The child's mom was next to me and I explained that her child had dropped the candy from his bucket and my son wanted to return them to him. She gratefully took the candy back and said "thank you" to Nixon, who was then right as rain and ready to move on. It never crossed his mind to keep the dropped candies, because they weren't his. I could not have been more proud of him than I was at that moment. 

   We walked about 2 miles overall and he was a champ the entire time. The last half-mile he took the mask off. This Halloween was one I had envisioned when I was pregnant with him and dreaming of our future with him. It took us 6 years, but it finally happened and it was so worth the wait!

The struggle planning a birthday party for a child on the spectrum...

   Nixon's birthday is less than a month away. He's well aware of how close his birthday is getting. He's been asking for over a week "Is my birthday tomorrow/the day after tomorrow, the day after that?" so I'm very aware of how excited he is about his birthday.
    He's been vocal about the type of party he wants (at a bounce house he went to a couple parties at last school year), he wants all his classmates there and he wants to sit in the inflatable throne. Really nothing else matters but that throne.
     But there's a part of me (and Mac) that worry we'll make these arrangements and no one will come. All the children in Nixon's class are on the spectrum or have other special needs that prevent them from functioning in a general education classroom. Nixon's told me of a child who can't handle the good morning song, so the class whispers it now to make it easier on this student. There haven't been classroom events beyond the general open house/beginning of school meeting, so I haven't gotten a chance to feel out any of the other parents, which means planning a birthday party including these children is beyond rough. Nixon's had meltdowns at this venue before and I'm not sure I can ask other parents to bring their child knowing other children may also react the same way.
    Mac and I made a unilateral decision tonight: We'll bring cupcakes to Nixon's class for his birthday and include goodie bags for each of the children in his class. No party at the venue.
    I'm looking to find an inflatable throne for him and I have a couple other ideas. We'll keep it small and simple for him but still fun.

    I hope we're making the best choice for him.

Learning to teach him how he learns, not how I know things to be.

   Raising a child on the Autism Spectrum is a challenge. Mac and I remind each other frequently that, although Nixon has autism, he does have a high-functioning form of it and we consider ourselves to be "lucky" in that aspect. But we still have struggles to help Nixon navigate in social settings and to help prepare him for the future and what it may hold for him.
    I thank the stars above for Nixon's affectionate nature, his overly verbal ways and even the way he tattles on himself. He makes me pause and look at the world from different angles and forces me to answer questions I'd rather he didn't ask. For every challenge our family faces because of Nixon's diagnosis, we grow and expand our world twice by overcoming those challenges together.

---------------------------------------------

   Last week Nixon and I had a mommy-and-me date. We have one-on-one dates with Nixon on Mac's weekends off. Nixon gets to choose who he goes out with and the chosen parent tries to plan a fun date, not always easy given Nixon's got a pretty limited number of places he feels comfortable in on a normal day but add a weekend crowd and it's a tightrope act. I thought this would be a good way for Mac and I to each work on our relationship with Nixon and learning who he is while he learns who we are, outside of being just "Mom" and "Dad".
    We went to Target, to look at all the new Star Wars products, clothes and toys. Nixon was having a blast, until we walked by the game section. I know why stores always have demonstration games set up, but I hate that stores always have demo games set up! Nixon loves this lately, and if he were with Mac they'd probably have more fun together, but he was with me and I am not a video game person. Instead of forcing him to walk away, and knowing it had the potential to result in a full-on meltdown, I decided to explain the point of a date. I took Nixon to a quiet corner of the store, so I'd have his attention, and explained that even though he was only on a date with me this could be an experience he'd remember when he was older and ready to start dating someone he liked. (Of course, he says "I like you, Mommy") I go on to say, "dating is about sharing what you like with the person you like and also the person you like sharing what they like with you. It's a about compromise. If you pick dinner, maybe your date chooses the movie you see. And sometimes it means NOT doing what you like because maybe the person you're dating doesn't like that thing, like video games, and that's okay. You'll just learn to do those things you like when you're not on a date."
     After our talk, Nixon agreed to 3 minutes at the game demo station and then we'd leave the game area for good. I was expecting a little argument when his time was up, but instead, he put the controller down, grabbed my hand and told me it's time for our date.

------------------------------------------------

      Nixon's been working very hard at earning Dojo points in his classroom, which he gets for different positive classroom behaviors. It's a classroom tool the teacher uses to track the children's behaviors throughout the day and on Friday they can earn rewards based on the total number of points earned for the week. 

      Nixon's magic number this week was 50 points, if he earned 50 points, he'd be able to change his Dojo avatar. Last week he earned 47, and wasn't upset or disappointed, instead he decided he was "going to work super hard and get ALL 50 POINTS this week!". On Thursday he went to school with 24 points for the week. He came home and told us "I need 4 points tomorrow! I have 46 Dojo points!". Friday comes, and of course on the day I want to check the app the most the whole server has a giant technical fart and I can't even sign in. I was able to see Nixon got his 4 points! 

      Turns out, Nixon earned his 4 points and then spent the rest of the day whining to avoid earning more points. In his very literal-thinking mind, he thought if he earned more than 50 points he'd lose his reward. I tried explaining to him that wasn't the case, but he insisted it was. I asked if he'd feel better if I messaged his teacher and double-checked what he was told about the Dojo rewards. He said that was okay and went to bed. I messaged his teacher, who replied this morning, and it was exactly as I thought. I thanked his teacher and reassured her I'd help Nixon understand the rewards (honestly, no one gets paid enough to spend an afternoon listening to Nixon whine on purpose!) in hopes to avoid the confusion in the future.

     Tonight I tried to explain it to Nixon. I tried explaining the word "minimum" but with no luck. So I changed my tactic. Nixon's understands things better when he has a point of reference. Instead of saying "minimum" I tried "at least", and related it to the rides at the fair he went on once. "In order to ride the ride, you had to be at least as tall as the arrow (and I held my hand out and point down to the top of my hand) on the sign. Did that mean if you were taller than the arrow you couldn't ride the ride?". Nixon thought about it and said "No! Because you went on the rides with me and you were above the sign!". I continued that "at least" simply meant he needed that number or more, in order to earn his reward, no exactly that number and only that number. 

     It's hard sometimes to help explain things to Nixon, especially because I can't always understand why he doesn't understand something. I've learned that if I ask simple questions, Nixon will guide me to what is bothering him and then I can help him solve the problem in a way he understands. He's forcing me to change the way I explain things because the way I know and understand things doesn't work for him. 

     The simple fact that I can help him understand a difficult concept using how he thinks, makes it easier for me to advocate for him and explain his behaviors to his teachers/doctors and other people who come into contact with him. I can also help explain methods that might both help Nixon and the other party reach a mutually beneficial way of accomplishing a task.  

     

First week of First Grade is in the books!

  Nixon's first day of school was Monday. Last Monday, August 24th. I had done the shopping for supplies, gotten his new backpack, packed his lunch and we'd even had an open house at his new school. He was excited. I was unbelievably anxious. Nixon was also riding a bus this year, something he was super excited about.

   Monday morning came, far too early in my opinion but my coffee maker was preset and brewed when I got up, Nixon was dressed and waiting for breakfast when I opened my eyes. I got up 2 hours before his bus was coming to give us plenty of time to get ready, without feeling rushed. When his bus came, Mac and I walked him to it and said our goodbyes. I did not cry.
   No really, I did not cry! We were all ready to put last year and his former school behind us.

    Nixon's attending another public school but in a special classroom, specifically for children with special needs.

    The first day, after school, the classroom social worker called to say Nixon had a good day. He tried to escape the class to avoid the work, at first, but by the afternoon he was responding to the token reward system the classroom uses. He needed a few reminders to use his indoor voice but otherwise he did very well.

    The rest of the week went much the same. A couple more phone calls, one was regarding an incident with Nixon and another student in the cafeteria Nixon told me about and I wanted to double check if the classroom staff were aware of it, and the second was about Nixon's first trip to the nurse resulting in an ice pack and a quarter-sized bruise on his arm after a bit of roughhousing with a classmate. Both phone calls the social worker informed me Nixon is making wonderful progress, quickly adapting to the routine of the classroom and no longer attempting to avoid his work like he had the first day. He's quickly earning his reward tokens.

   I couldn't have been more relieved! Given the gut-dropping experiences from last year's school phone calls, being called and hearing his doing great is taking some adjusting.

    I'm also navigating another new territory as a parent: bullying and name calling, from the outside in.
    Nixon came home one day and said "there's a bad boy in my class" and proceeded to tell me, the boy was having what sounded like a meltdown after lunch time. Nixon had plenty of these last year, lunch was a constant sensory overload for him. Nixon told me "the mean boy stepped on me and then started to cry and yell".
    As calmly as I could, I reminded Nixon of his actions last year, from being in the cafeteria. I reminded Nixon of the times I had to go to school and help him calm himself because his teachers couldn't. I told him, "Nixon, you weren't being bad last year and your classmate wasn't bad or mean today. His brain just couldn't take anymore but he, maybe, didn't know how to ask for a break. He's not trying to hurt you on purpose, you were just kind of around when he hit his max limit. But he's not any more a bad or mean kid than you are or were last year. He, and you, just kind of sometimes need breaks but don't always get the warnings from your body before your brain needs a break. Just like at home, Dad and I give you space to recover when you've had enough, make sure you respect your classmates space and let them recover, okay?"
     Friday, Nixon says the same boy from earlier in the week, was called a "crybaby" in class by another student. I asked Nixon if he called him that. Nixon said "No, but I did laugh because it's a funny word, he was crying but he's too big to be a baby" (he's such a literal thinker!). We had another talk and I asked him to be kind to all his classmates and to stand up for the ones who need a voice, like the one being called names, because everyone needs a friend.

   
    Overall, his first week of school was pretty darned great! No referrals, no letters home, no trips to the principals office. I call it a success!  

My baby waiting for his bus on the first day of school!

With coping skills and techniques come some amazing moments!

    Life keeps moving forward, no matter how many times I reach out and try to find the pause button. Nixon's had 3 meet and play sessions with his ABA therapist. They're building a relationship that will expand to more demand-based play. For now they play games and sports during the sessions. Nixon gets frustrated but his therapist works with him and Nixon responds.
    One of their session days, our community was getting the weekly lawn care done. It wasn't safe for them to be playing in the yard while the yard guys were mowing, especially because there's always stuff in the grass getting tossed up by the mowers, so I suggested bubbles on our balcony for a bit. However, again lawn guys mowing, I offered Nixon his headphones to help cancel out some of the noise from the lawn mowers.
    This is what that looked like:

    Nixon also had to go to the dentist last week. That was...not fun. His dentist is amazing! She was wonderful with him, very patient and understanding of his autism diagnosis. I brought my ever-growing bag of tricks, which now also includes a weighted lap pillow, which in a former life was a pillow pet. (One night, a zipper, polybeads and my sewing kit made it all happen)

     The end result of the trip was a cleaning, some fluoride, and learning that all future treatments beyond cleanings will be done in a hospital setting under sedation. That is, Nixon will be sedated, not me, though after last week's visit I wouldn't be against a mild sedative for myself.
    Unfortunately, Nixon also had an abscess that had drained itself naturally, but his dentist wanted to treat him with a round of antibiotics to be safe. This is for a couple reason but largely because Nixon never mentioned any pain in his mouth at all, and having had an abscess once myself I'm amazed and shocked by that. He registers pain differently which makes treating some ailments harder, like an abscess. He was given amoxacillin in addition to a second, back-up only fill if needed, prescription. Why? Well, I have an allergy to both penicillin and amoxacillin, and my dad has an allergy to penicillin. Nixon's never been on either (never needed one before) and the doctor was understanding of my concerns.
    Yep, he had a reaction to the amoxacillin. It started with a stomach ache and the next dose he had a couple blisters form around his mouth, but it took him being on the medication for almost 3 days before the reactions started.
    Thank gods for that second prescription!

------------------------------------------------------------------------------------

     Mac was off this weekend and thanks to a good friend who adores Nixon, he and I had a date for the first time in months. And it was lovely!

     Today we had a family date. We went to the Brick Fair in Virginia, not a Lego sponsored event, but lots of Legos there! 

     Nixon was good, he had a few issues mostly waiting in lines or trying to see displays when people wouldn't move. He did get upset when we were asking him too many questions (we were trying to give him options for items to purchase for him, but it was too much for him). He always managed to stop himself before he got too upset. He'd refocus on something else and deescalate. And in the end, he decided when he was ready to go and asked if we could leave now. 

     We left. 

Trying to amuse him while waiting to get a clear spot to view the moving setups.

Trying so hard to keep it together while waiting to go into the bounce house

Nixon bolted from me when he saw this! 

Sliding a block down the ramp in the play area

Good night kisses for my boy, BeBe in hand and fingers in mouth.

     

Visited the new school and went to a pool too!

    Summer break is flying by! Nixon has had an Occupational Therapy (OT), Speech Therapy (SP) and ABA therapy evaluations. The ABA meeting was nice, turned out Nixon already knew the therapist he'll be working with! (Last summer, Mac and I found a local OT who was offering sensory groups for kids. Nixon went to 5 groups and the therapist he'll be working with for his ABA time, also worked with him in that group. Nixon recognized him as soon as he entered our home!)

  * I've attempted to post this twice before. I wrote the entire blog post, only to have it not save and not publish, in spite of the auto save feature. Here's hoping third times a charm*

    Nixon's going to be attending a different school this fall. It'll be a satellite classroom of a Baltimore school called Kennedy Krieger. Currently, Nixon will have 5 classmates (whom he met the day we visited the Baltimore school). His classroom will also have a teacher, 2 aides and (I believe) 2 social workers. The class will never be larger than 10 children.
    Perhaps the thing I liked best is, unless a student is harming him/herself or other students they aren't removed from the class. They'll be placed in a safe area but they don't "escape" the work. Instead, the 4-5 adults in the room all focus on positive behaviors and ignoring the negatives (yelling/throwing/evading/running, etc.). Each child will have a reward chart with a reward they chose to work for each day. As soon as they reach the goal, they earn that reward no matter what task they are currently doing in the classroom!
     Each student may also join the general education first grade classroom, when/if they are ready, but it's not required. What a relief!
     In addition to that, the curriculum is catered to each child. Some are working just below grade level, some right at grade level and some are given work above grade level. It's a wonderful class and I'm excitedly apprehensive about Nixon's upcoming school year.

---------------------------------------------------------------------------------

     Nixon is a child that has always hated water on his face and in his ears. It's made bath time comparable to a circle of Hell, at times. When he was around 2 years old, he'd scream bloody murder while I washed his hair. By then end of a bath, in those days, we'd both be wet and crying messes.
    It's gotten easier, but he still has issues with water above his neck. I have to hand him a dry wash cloth, folded in half (shaped like a triangle), which he uses to cover his ears and cover his face with it, Ala western bandit style. When his hair is buzzed short, I use a wash cloth with shampoo on it and then a cup to rinse with. Easy peasy. 

     We spent one day at a friend's apartment complex community pool. Nixon hasn't been in a pool in a couple years. Wear his brand new Puddle Jumper, he still took almost half an hour to actually venture off the steps into the pool. As he grew more confident, he jumped and splashed, he clung onto my back and kicked his legs behind us. He loved the water!
     Mac and I eventually switched off, Mac played in the pool with Nixon while I sat out on the patio. After almost 2 hours in the pool, it was a fight to get Nixon out of it to go home. Best part was, he didn't mind the water on his face at all! But his slightly fearless nature had me concerned at times. Swimming lessons may be in his future this fall. There's plenty of places locally that offer swimming lesson year round. 

Our journey into the world of therapies has just begun

    Yesterday Nixon had his OT (Occupational Therapy) evaluation. It was....rough. He went into full-on sensory overload and had a resulting sensory overload meltdown when it was time to leave. Thankfully, Mac was with me and was able to pick him up and carry him out of the office. Nixon was doing his ear-splitting screeching and no one needs to hear that for any longer than absolutely necessary.
   On the way out, I was talking to the therapist who had evaluated Nixon and there was a woman in the waiting room. She was very kind about Nixon's behavior and remarked about how calmly I was handling his outburst. I thanked her and just responded with a comment of "It is what it is, if I'm not calm he feeds off my emotional response and that doesn't help any of us" and gave a uncomfortable chuckle. She smile kindly and said "You're doing better than you realize. You're smiling and already using coping skills to handle the cards you're dealt. You're going to do just fine, Hun. Even if you don't believe it right now. You're special family will be just fine."
    I thanked her again and left. I left before she could see the tears her kind words had caused to well up in my eyes. I choked them down as I headed down the stairs to join Mac, who was struggling with Nixon at the car. I handed everything in my hands to Mac and I gave him a break, because I saw that he was reaching his max and needed one. I went after Nixon, who was resisting getting into the car. I chased him down the sidewalk and saw his smile replace the scream. I picked him up and carried him to the car, the screaming returned. I buckled him in and when he was quiet, I made a deal with him: 2 minutes of quiet and he'd be able to play on my phone.
   After 5 minutes of silence, I handed him my phone.
   Mac and I spoke about the morning on the 25-minute drive home, because until then Mac had really only heard about these meltdowns but never really witnessed one from beginning to end. I explained that when the screeching starts, rationalizing with Nixon ends. At that moment, removing is the only option but it has to be done without emotion and mostly silently. It's hard, because during those moments I've had Nixon tell me I'm awful, I'm not his mom and it's his worst day ever. Those things are hard to hear but I know he doesn't really mean them, he's saying things to get a reaction from me, which I've learned to not give him.
 
   I don't feel like I'm doing anything extraordinary as a mother. I'm living life as best I can and learning to accept what our life will be like. It's not like everyone else's but sometimes I feel bad that everyone else won't know how awesome our life is!

    In other news: Next Tuesday morning, the 16th, we have our Central IEP board meeting. I'm very anxious about this meeting. There will only be one representative from the school present and I'm hoping to be given a chance to address some recent issues that Nixon has mentioned at home.
    The most upsetting happened last week. Nixon was having a bad day, and in the middle of him recovering and deescalating his behavior, he was laying on the floor face down, he said "I'm sorry I'm being such a brat, Mom". I was completely taken aback because I call him a lot of things ("booger", "punk", "tushie", to name a few) but never "brat". I asked him why he'd say that and he said "Well, sometimes [aide's name] tells me that when I'm being difficult". Now I have an issue with an adult name calling a child in her care who is obviously having a hard time. He's not a bad kid, he's having a difficult time! Mac was standing right there when Nixon said this and I thank gods he was because I nearly lost my mind! But, I can't do that because Nixon will misinterpret my reaction as something he did and react defensively.
     I haven't even been able to bring this to the school because I already know it'll be brushed off as "Nixon misunderstood" or something like that. They simply don't understand that he doesn't lie. He is incapable of lying because he doesn't understand the concept. He tattles on himself for things he does wrong!
   The other issue, is apparently, someone at the school has taken upon themselves to tell Nixon he's not returning to the school next year because "you are a bad kid who made a lot of bad choices and will be going to a new school next year." He won't tell me who told him this, but he's told both Mac and myself that he was told this at school. It was no one at the school's place to tell him this! It's as if they stopped caring about his emotions and just want to hurt him and see him lash out!

    Only a few more days of school and he's out of there. It's taken a lot of willpower not to start cussing every one of these adults out for the pain and negative self-esteem issues they're causing my son to have! He's 6, he's a gentle soul and he cares about them so much he tries protecting them even after they've said hurtful things to him!