Using creative ways to help Nixon navigate social settings

   I can't speak for other parents of children with ASD, but in my own daily life with Nixon social situations are tough. He's not good at respecting personal space. He's a very affectionate kid but that's not always appropriate for school.

    Nixon has developed a friendship with another classmate. Nixon tells us that A is his "bff...best friends forever". It's a touching milestone because, until A, he just parallel played with classmates. With A, Nixon has learned to play WITH another child. They've even created a game to play together during recess.
   But with this new friendship comes issues of another kind. Nixon doesn't like sharing A with other classmates. He can sometimes become quite a pill when A plays with other children, even if Nixon is included in the group.
   Nixon's also been having trouble keeping his hands to himself in school.

   And that is where I come in with another creative way to help him navigate life.
 
   Nixon loves bubbles. I relied on this love to help explain personal space. I had him make a half-circle with his arms, from the side of his body to right out in front of his chest. I told him that was his "personal bubble". I went on to explain that everyone has a bubble around them. Sometime, a friend will invite into their bubble (for hugs/high-fives/kisses, etc.) and that's okay. But if you aren't invited into a friend's bubble and you go into it anyways, you'll pop that friend's bubble and your own. I asked Nixon, "How do you feel when the bubbles we blow outside pop?". Nixon said "it makes me very sad". I told him that's sometimes how friends feel when we invade their personal space.
    Every day before school I remind Nixon "don't be a bubble popper". He laughs and tells me he'll try his best. That's all I ever ask,

"What's going on with my head? I can't stop thinking about..."

   Here we are, halfway through Nixon's school year. His second report card just came home Friday and, for the most part, he improved or stayed the same across the board. Except reading. He slipped in reading, going from at grade level, to below grade level. We'll be addressing that at home with more reading.


    As any parent knows, life with children is full of struggles. We as parents struggle and our children struggle. But parents of a child with special needs my struggles seem to be two-fold.
    I watch Nixon struggle with social interactions. I've seen him overwhelmed by something as small as a neighbor's dog approaching him. Nixon knows this dog, and in the past has pet and enjoyed this dog's affection, but still gets overwhelmed and freezes in place when the dog simply brushed his side. The issue isn't the dog, but rather the unexpected contact with the dog. It happened so fast, Nixon couldn't process the interaction and continue walking. It hurts to see him so overwhelmed because he thinks he's the problem, when in reality it's just an unfortunately timed series of events that led to his actions, or lack thereof. Thankfully most of our neighbors are kind and understanding of Nixon and dogs, and in situations like this they call their dogs over and Nixon unfreezes and goes into the house without further incidents. And he almost always gushes about how much the dog loves him and how much he loves the dog!

    Nixon struggles with focusing on a task. He'll ask to get on the computer or use his tablet, which with time limits he's allowed daily. The struggle comes when I ask him to wait, patiently, for a few minutes. Sometimes I'm in the middle of something and need to complete it first, other times I ask him to wait simply to work on his patience. (He struggles with it in school as well, and often times causes a disruption when he can't do his desired task right away.) He is improving. A few months ago, asking him to wait would have resulted in a full-on meltdown. Now, when asked to wait, he pouts mostly. Sometimes he will throw a fit but he goes to his room to calm down before it gets any worse.
    He also has a new phrase that he'll repeat endlessly while waiting. "I'm trying so hard but my brain just won't stop thinking about (computer time/tablet time)." He will grab his hair and pull his hair as he says this too. I try to always take time and acknowledge his effort when he vocalizes his mental discomfort.

    I can't end this post on a down note. Nixon has developed his first peer friendship! He's got his first BFF! He is so excited about this friendship and we are as well. Nixon even asked if he could get his BFF a Valentine's Day gift. We bought classroom gifts and Nixon will be able to address the gift bag for his friend, in his own handwriting, which seemed to appease him.
    This friendship is a huge milestone for Nixon. At his preschool and in Kindergarten, he simple played around other children. This year, he's actively playing WITH a child and sometimes even a group of classmates. Nixon and his bff even invented a Time Travel game of tag they play together at recess!

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.

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!

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     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.

     

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!

 

   

Catching up on behavior charts.....

   If you read my previous post, you might understand why I've fallen behind on the daily posts. I'm struggling to catch up and this week I had an appointment with my doctor.

   I could bore you with a bunch of pictures of all the past behavior charts, but instead I'll just fill in the blanks.
   Nixon is still struggling in school. He's still having time outside of class. He's still having meltdowns in class and is having a tough time fully recovering and moving on. He starts his days on such a good foot, leaves me car ready for school and then at the end of the day his chart shows he's struggled a lot.

    But then, a small almost innocent question from the teacher's aide, and the pieces started falling into place.
    "How long since Miss S left?"
    Miss S is a close family friend, who moved away in February. Nixon adored her and she adores him.
    And Nixon's behavioral regression began about the time she left. I never put the pieces together and Nixon doesn't know how to verbalize his emotions. He feels so much and doesn't always act appropriately based on those emotions.

    I felt so angry and so heartbroken at the same time, because I never thought the regression would have such an easy/simple explanation.
    I talked to Mac about it. I brainstormed. I had to try to help ease his heartache and still get him back on track in school.
    In the end I reached out to S and asked her for help. With her help, Nixon has a very special stuffed animal on the way with a very special recorded message just for him from S. I don't know if it will fix things, but it's an attempt to bandaid his heart.

    On top of Nixon dealing with Miss S moving away, Mac leaves for 12 weeks and a few days of training tomorrow. He was supposed to leave today, in fact we took him to the airport and said our "see you later" at the gate, only to have to go back and pick him up 4 hours later due to a flight cancellation. He is leaving (for real!) tomorrow afternoon. Mac also made a special bear for Nixon, with a special message, that he gave him before we left him.

Capt Bearmerica, Nixon and Mac

    **I'll be honest...I'm pretty jealous of Nixon's bear. It's an awesome gift and I sort of wish I had one for myself**


   Nixon had a 2 hour delay one day last week, a snow day and also a doctor's appointment for his asthma. He grew another .75 inch in a month! His asthma is under control and he won't be seen again for it until June.
   I have an IEP reevaluation meeting Wednesday morning.

The uglier, less discussed side of life with acronyms *warning, cursing in post*

    This blog isn't just about Nixon's school days. It's basically for everything that affects our lives since the introduction of all these acronyms.

    Today I'm going to pull back the curtain and share where I am, in my life, right now. It's not pretty and I'm not proud of it, but I am open enough to share, so that other parents in this situation right now can see they're not alone.

   Mac is leaving for a training course on Sunday. He'll be gone for nearly 12 weeks. We have no plans to go visit him because Nixon will not handle seeing him only to leave again. The traveling alone would be too much for him to handle. (He and I took a trip home to Western New York in November. We flew and spent 5 days in my hometown. He couldn't fully adjust to the surroundings and had a giant meltdown on Thanksgiving at my grandmother's house.)

   Lately, I've been a very shitty mom. I'm short-tempered, lack patience and very stressed out. I'm also fairly certain I have some level of depression going on. There are days I can barely get off the sofa, while Nixon's in school. I nap because it passes time and gets me away from my own thoughts. My sleep is riddled with anxiety dreams and panicked nightmares. I find myself yelling over the smallest, stupidest things and I know I'm overreacting but I can't stop the anger leaving my lips. I'm snapping at Nixon over things he can't control. Under normal circumstances, I'll help him to try to curb the behaviors (like his repeating phrases 2-5 times in a row) but in the past week I have zero patience for these behaviors. I barely have the energy, or even care enough, to shower. I find myself not caring about food or eating to eat, not out of hunger.
   Perhaps the biggest sign that something is not right has been my lack of wanting coffee. If there's one thing in this world that I truly enjoy, it's my daily cup(s) of coffee. But last week I found myself not caring if I had a cup of coffee or not.
    I have the warning signs of a panic attack every time Nixon's school calls me. My heartbeat races, I feel the room getting closer to me, I feel my breathing increase. These are all as soon as I recognize the ringtone I've set for the school on my phone, before I've even answered my mind is already convinced Nixon did something and I'm getting the call to tell me about it. There's never a time that I worry he's hurt himself, I think my mom-sense would know that before I got a phone call, but it's always a sense of dread about what he could have possibly done and if anyone else was affected by it.

   I called last week for an appointment with my doctor, to discuss all these issues. With Mac leaving in 6 days, I have to get this under control somehow before he leaves. My stress level is about to quadruple and if I'm a giant bag of nuts now I'll be much worse when it's just Nixon and I. If being the mother Nixon needs requires me to get help and some medications, I'll do it.
   Asking for help doesn't make me weak. Being put on medications doesn't make me a failure. Not asking for help and taking the meds would make me a horrible mom. Sometimes it's braver to admit you can't do it alone then to tough it out. I've been down this road before, with my emotions ruining my moods and wrecking my relationship with Nixon. Trust me, I refuse to see fear in his eyes when he looks at me, and lately with my screaming fits that's exactly what I see. I'm too strong to let this ruin him! I owe it to him to fix my shit so I can be the mother he needs while Mac's gone.