unexpected events

So last Friday at the fair, amidst the drama that unfolded with my son, I ended up having severe severe cramps. Like, child-birthing level pain cramps. I'm sure that the 45 minutes of complete agony I was in didn't help my freak-out an hour and a half later when Johnny ran away from me in the crowd.

Monday night, said cramps returned but didn't go away. I was experiencing what seriously felt like labor -- rolling, waving contractions. Intense and unbearable. Other woman-issues occurred which I will not go into. After waiting for the hubby to get home (2 hours later, but not at all his fault!) and getting a little sugar into me in hopes of calming the shaking that had begun all over my body, I finally gave in to Steve's suggestion and we went up to the ER around 8:30. His mom had come to stay with Johnny for the 2 hours or so we would be gone.

2 hours quickly turned into 2 days for me. It turns out that I was in fact 9 1/2 weeks pregnant, but that it was an ectopic pregnancy. My insides were being torn apart by a baby that was too big for it's surroundings. 

I didn't even know I was pregnant. 

After an emergency 3:00am pelvic laparoscopy to extract the fetus, cut out the damage and drain my belly of the blood that had begun filling it, I found myself laying in a hospital bed feeling completely detached from reality. The following 24 hours were filled with more intense pain, despite the medication they provided, and after yet another overnight, I returned home today around 1:30pm. The doctors told me I was lucky to have caught the pregnancy just in time, as most don't make it to 9 weeks.   

Johnny has been handling all of this rather well. Obviously a 4-year-old doesn't get what is going on, and we aren't about to explain to him what all has happened, but he is dealing with mommy "being sick" about as well as I could have hoped for. He still needs constant reminding that he has to move very slowly and be extra careful around mommy, but he is trying hard to be my "big helper" for the time being. He keeps wanting to hug me and cuddle so I'll feel better, which I would love, but it isn't something that can happen yet. He did get me a doctor bear to take care of me overnight while he couldn't be near me. Cutie pie.

I'm now 1 for 3 on pregnancies. But let me tell ya -- the 1 kiddo that I did successfully bring into this world is an amazing little dude! 

crowds & safety

So I have spent the past two days down at Grange Fair with Johnny. I'm quite proud of both of us, really. It is no small feat to have him out and about in public for as long as he was, let alone 2 days in a row! We were gone from about 11:30-4 yesterday and 10-6 today. For some of those hours I had extra help, for some of them I didn't. Wednesday we even ran a few errands over the course of the day and it went pretty well. The biggest incident through all of this week happened about 15 minutes after Erin left us at the fair. (Isn't it always true that if you have someone with you to specifically observe undesired behavior, the kid will act up the minute they're gone?!) Anyway, I had Johnny and Ruthie (my cousin's kid) with me and we were trying to win a fish. You know that game where you throw ping-pong balls at little cups of colored water (sometimes mini fishbowls) and try to win a penny fish? Yeah... that one. Well, guess who didn't win?

Johnny started kicking and screaming about his loss and then darted off into the crowd. I had to chase him down. I was squatted down talking to him and trying to get him to calm down and then he darted off into the crowd for a second time. Ruthie! I'm so lucky I had my mom with me to stay with her while I chased my little guy because there is no way I could have done both. I ended up having to carry him back to the wagon I'd had them riding around in and, honestly, I'll admit, bribe him into staying in until we got back to our tent. Really, I'd have done just about anything to make sure he didn't go running off again. Man -- that kid can run! I have to figure out a better way to handle such a dangerous situation, because telling him (repeatedly) that it wasn't a safe choice really didn't seem to phase him. Stern voice and all, he wasn't buying what I was selling. "You could fall down and get badly hurt, you could get lost, someone bad could take you and keep you from ever seeing mommy ever again," and the list goes on. Nope. No reaction. Nada.

Mommy needed a minute to breathe, even if he didn't.

After saying goodbye to my mom, who had to go, I eventually got the kids back to my family's tent. Johnny seemed calm again and so we stayed. It wasn't until about 2 hours later that he began to show me that the day was over. I had promised Steve I would stop and pick up dinner for him at the new BBQ shack in town, using an awesome coupon that would make it cost all of about $3, so I just packed Johnny up and headed that way. Steve's coworkers wanted to try some too, so I ended up with a whole list of stuff to get. While I was a little anxious about getting the kid unloaded to go in and wait for food to be made, I figured I had already promised everyone and it wouldn't be too bad, right? Well... then the kid did sprints back and forth all over the restaurant no matter how many times I tried to force him to stay with me. Then while I was carrying a huge bag of food and 3 large drinks to the car, he choose to pull on me, let go, pull on me, let go, (almost making me face-plant several times) and then stopped in the middle of the parking lot and refused to walk any further. I was still shocked. Enraged, scared, and shocked. After this afternoon's scare at the fair, you'd think I would be ready for him to stand dead-still in the middle of a crowded parking lot, but no. I was just dumbfounded. A car just about hit him before I could literally shove him out of the way.

Enter Bad Mommy.

I yelled. I yelled at the top of my lungs. I yelled at the top of my lungs and with my only free pinkie I dragged and, with my knees, shepherded my son over to our car. I set everything down on the ground, unlocked the door, and glared my son into his seat. I strapped him in and slammed the door. Bad Mommy. I know, my actions weren't the least bit productive. I didn't set a good example, I didn't make "good choices" of my own, and I wasn't even remotely caring and gentle. Strike that, I was caring. Yelling because you're scared out of your wits for someone isn't the typical definition of caring, but it certainly came from the part of me that cares too much about my kid to let him get run over.

I spent the whole drive to AT&T trying to calm myself with deep breaths and the reassurance that Johnny can't yet escape his car seat. I could keep him strapped in place as long as it would take for me to chill out. Lucky for him, by the time we made it home I was a little better.

Safety! It is something that he seems to be so aware of most of the time. We can tell him, "that isn't safe" and he responds so well! Why, when it comes to one of the biggest safety issues, doesn't he pay any attention?

My beautiful little boy is now sitting downstairs playing a game on his iPad and politely asking his daddy to pour him a drink. Angelic, amazing, sweet, "awesomesauce"... but for having had such a good week overall, he managed to scare the crap out of me twice.

Gotta stay safe, buddy.

shaving cream

Of all of the sensory activities I have done with Johnny, I think today's was my favorite: a shaving cream pool! We ran to the store (which he fought against, claiming I was taking him away from his fun) and bought 10 of the $1 cans of shaving cream. After stripping the kid down and slathering him with sunscreen, I replaced his hat and we began to empty the cans into the kiddie pool. We squirted some food coloring in on top of the pile and I asked Johnny to get in. Despite the fun he was having filling the pool, Johnny had no interest in getting the shaving cream all over him. I jumped in myself and began to drag my feet around the bottom, mixing up some of the colors.

Colors!

Johnny got in with me and began cautiously sliding around. The neighbors came over to check it out, and after hosing my legs off, I picked up the younger kiddo and dropped him in next to Johnny. All three kids were extremely unsure of the texture, and it took a good 15 minutes to get them going. Once they did, WOW! It was impossible to get them out! 

We let them play for a good hour and a half or so, complete with a sprinkler set back a bit from the pool, and enjoyed watching the mess. There was foam all over the yard! Giggles and constant excitement -- mixing the colors and then rinsing everything off... getting covered all over again! 

I really couldn't have asked for a cooler afternoon. It was good to see Johnny enjoy himself so much, and I think we will have to do this at least once a summer from here on out. Next time maybe I'll put on a suit and roll around in it as well?!

Disclaimer: Bees seem drawn to shaving cream. If you're going to do this, it is good to know ahead of time. None of the kids got stung, but I was honestly a bit impressed that we finally got the bees to go away! (We even moved where the pool was right near the beginning and they just followed us!)

questions about death

So, I didn't actually expect my kid to be only 4 when he came to me with questions about the subject of death. Last night, after having been put to sleep, Johnny came running out of his room sobbing and crawled up into my lap, repeatedly asking, "What will I do? What will I DO?" The poor little dude was so upset I could barely calm him down enough to explain. I asked him what he was talking about?!

"What will I do if you and daddy both die? I won't have any parents! I won't have anyone to take care of me! I WON'T HAVE PARENTS!"

My heart hurt. I felt the heart in my chest constrict painfully.

After many reassurances that mommy and daddy are here for him and not going anywhere, (because I really don't need my kid to have nightmares about the possibility of death and how it reaches everyone at different points in their life -- he is far too literal for that at this age) he began to calm down. Lots of hugs, rocking, holding him tight... Steve and I finally talked him back into his room and Steve tucked him in again.

Not even 5 minutes later, I hear Johnny bawling again. He came running out of his room for a second time and crawled back onto me, voicing his new fear: "What about Nana? SHE DOESN'T HAVE ANY PARENTS!!!" Well, yes. Nana doesn't have any parents, as she is in her 80's and they passed on long before I even met her. Steve said he was a baby when they died. "BUT SHE WILL BE ALL ALOOOOONE!" Johnny continued to sob. He insisted that Nana needs new parents and that we had to find some. He was genuinely terrified for her. If he can't live without his parents, how can anyone live that way? With no one to tuck them in at night and feed them Special Chocolate Drinks? He was convinced that Nana can't take care of herself and that the only people in life with a caregiver role are parents. We talked him off the ledge so-to-speak and got him calm again. Aunt Lizzie, via text message, promised to be Nana's new parent. After an argument that Nana needs a dad too, Lizzie promised to find one and that it would be alright. We gave him extra hugs and kisses again, and he went back to bed. Thankfully, he did fall asleep. He hasn't said a word about death since he woke up this morning, and I'm hoping the fear has passed.

Johnny's fear is legitimate, though. I'm not saying Steve or I are going to die anytime soon, but if I were to make a list of the things I fear most in life, Johnny's death is at the very top. I understand his desperation and complete terror. I don't know how I would pick myself back up if something were to happen to my son. Am I a bad wife for feeling that the loss of my child would actually be even harder for me than the loss of my husband? I don't think so. Steve and I both agreed a long time ago that if it came down to a matter of saving a child or a spouse, (say in a burning building) we'd both save our kid and expect the other to do the same. I don't think either of us could look at the other if we had chosen our spouse's life over that of the little human we have created together. There would be no forgiveness. I'll readily admit, I'm just not that big of a person. There is nothing scarier in my life than the thought of losing my son. And I'm sure that feeling will extend to any additional children down the road.

So, Johnny has become afraid of death. I don't want him to be, but I understand it. I also think there is something to be said about understanding the value of life. While the little dude doesn't fully grasp the concept of death and all that it entails, (thank goodness!) he does understand things to a certain extent. Maybe now it will be easier for him to understand why mama says we don't "kill" the pigs in Angry Birds, we "squish" them: they just disappear before reappearing in the next level. Because while he is only 4 years old, a young and (mostly) innocent child, death should have no role in his life. It is a sad day when death reaches into the life of any child.

Grandpa Gary said we can look for a new father for Nana on eBay. They sell everything on there.

manners

I get really sick and tired of people who judge when a child doesn't have perfect manners. Just because my child (or someone other kid, it's not just Johnny) doesn't always say "thank you" or show appropriate appreciation for a gift doesn't mean that the parents aren't doing their job. Kids are kids. This strange expectation that kids always maintain a sweet and polite disposition is not only insane, it is unrealistic.

I'll go ahead and say that the majority of people who seem to be of this belief are either childless or have fully grown children and seem too removed from their own parenting days to remember what it was like. So, to the people out there who fit in these two categories: chill out! My kid isn't a horrible little boy just because he isn't always perfect. He is a kid, for Pete's sake. He's 4.

A few days ago, Johnny was given a cool new hat for a present and instead of saying thanks, he promptly opened the front door and chucked it outside onto the lawn, yelling "I DON'T LIKE THAT HAT! I DON'T WANT IT! I'LL NEVER WEAR IT!" Thankfully my friend Steph, the benefactor and a woman who has yet to have children of her own, wasn't phased and didn't mind in the least. Was his reaction socially appropriate? No. Did mama correct him and insist that he use his manners before he was allowed to do anything else that day? Of course. But most importantly, in my mind, Steph didn't freak out or make some snide little comment about how he wasn't polite and needs to be taught some respect. Because I'm not kidding-- I've gotten that type of comment on more occasions than I can count. And guess what? Not only is a negative reaction like that not necessary and in and of it's self rude, it is counterproductive! When my kid hears you telling me that he needs to act differently, you're essentially guaranteeing he will react the same way the next time. Way to go, you have failed your agenda. My child remains a child; crazy, hyper, sometimes insensitive, and extremely blunt. Just like every other kid his age in the world.

When you think about it, about 90% of a parent's interaction with their child consists of life instruction. I'm sorry, but if someone was correcting me every step of the way, I'd be inclined to punch them in the face. So really, if a kid has to be told repeatedly to be polite and say "thank you" even if they didn't like a present, "excuse me" instead of interrupting a conversation, or "I'm sorry" when they've come up short on an expected response, I think we're all just lucky when they actually listen and do it.

"Chew with your mouth closed."
"Sit facing forward in your seat."
"Keep your hands out of your mouth."
"Stay in the kitchen with your drink."
"Say hello."
"Say goodbye."
"Don't jump on that."
"Stand still."
"Come here."
"Go there."

"Use your manners."

Are parents ever not telling their kids to act differently? -- And I'm not saying that it isn't necessary, it is after all the job of the parent to teach their children how to behave appropriately. But really? With the constant onslaught of instructions, is it any wonder that they don't always get it right? I mean, would you want to be told what to do all of the time? That you're wrong? That you disappointed someone again, after they "just told you 10 times"? So complaining grumpy people: calm yourselves. Or I might just start correcting your manners. Believe me, you fail in that department far more often than you realize.

(And by the way, Johnny decided the next day that his new hat from Steph is his favorite. NERD.)

transitions/changes & repetition

We've got some friends in from South Korea for a few days, and it's been entertaining to watch Johnny try and find a way to adjust to having extra people in the house. I spent all day yesterday preparing him for their arrival; reminding him regularly that they were going to be coming, where they were going to be sleeping, and what changes to his routine would be required. He fought me right up until about 10 minutes before they walked in the door, and then he mellowed out. Right now, he is sitting on my bed watching Pingu because they're in "his space" in the living room. (After our basement flooded, we have been using the spare room as storage, so they're unfortunately unable to have their own "space" while they are here!) He keeps bugging me to go downstairs, but I've asked him to use his patient body and sit with me until his daddy gets home in a few minutes to make breakfast and the hour is late enough that we won't be cutting into Steph & Rick's sleep time too much.

What I've noticed over the past 24 hours since I first brought up the topic of visitors to Johnny is that his instances of verbal repetition have increased drastically when we are discussing the parts of his daily routine that aren't able to stay the same for a few days. "But mommy... mommy... mommy... but mommy... I need my space! I need it! I need my space in the living room. It's my space. It's my space. But mommy... it's my space. I need my space!" -- He is totally calm while telling me this, so it isn't like he is having a tantrum and too worked up to realize he has already said these things. He isn't yelling them, he is simply repeating them over and over.

Johnny has always had repetition issues. I think mine are often worse than his, but he has always "gotten stuck" on one verbal message and looped for a bit before being able to continue on his way and communicate other things to us. The more worked up he is, the more this happens. It almost sounds like he is stammering, but he isn't tripping over the words. He is just helplessly trying to make sure I understand his message and intent in full. He mentally fixates and can't quite push past it until he is sure he has accurately expressed himself.

As with most kids, the exception of the rule to his problem with changes in his routine are when it involves something he really wants to do. At least in this, he is like most neurotypical kids. I know that a lot of kids on the spectrum have a hard time adjusting to any differences in their schedule, even when the activity is one that they would enjoy, but that isn't the case with Johnny. The other day, he woke up from his afternoon nap to find a tent in our front yard. He was absolutely psyched for the impromptu "camping trip" with mommy that night. The problem would have been if I had announced it to him three days before and for some reason it ended up not being able to happen. His reaction and inability to cope with unwanted changes in plans can be disastrous. It surpasses the typical "bummed" (or even small tantrum) response that most kids would give and quickly escalates to a full-blown WWIII. So, I try to wait until the last possible minute to inform him of positive changes in his day. Occasionally I gauge his reaction wrong and he isn't excited about a playdate I've made for him or the dinner plans with grandpa. Most of the time I get it right!

Camping was a win.

day four: #NAC17

So after my frustration of yesterday, I never did get around to summarizing some of the sessions I attended on Tuesday and Wednesday. Tuesday morning started out with a lesson on the direction parents can take after their child is diagnosed with autism. Roxann Barnett of the PA Child Foster Care and Adoption Corporation hosted a more informal and smaller group that allowed for the asking of questions throughout the presentation. We discussed medical insurance companies and how to navigate them, especially MA, the importance of parent education and the need to make sure any information (in particular, online) is based in fact. Scientifically proven interventions are much more likely to help your child, as they've been tested. The conversation turned to the various agencies in Pennsylvania that exist to help children on the spectrum, and she was extremely helpful in outlining the hierarchy of aid workers. I really don't know where along the lines people expect parents to learn these things, because none of it has ever been explained to me, and it is kind of awkward to have a "professional" come into your home and then demand their credentials and a breakdown of who is in charge of who at their company. Roxann stressed the importance of getting over that idea that you're being rude, because it is crucial that your child is getting help from people who know what they are doing. She also encouraged parents to go above an aid's head to their superior if there are any personality conflicts or incompetency on the part of the person who is working one-on-one with your child. Just because we have been taught all our lives to be extremely polite, that doesn't mean you can't be polite while demanding the appropriate help for your child.

Tuesday afternoon I found myself in one of the most informative sessions I've attended yet. Rachel Kittenbrink of PaTTAN had an interactive workshop about how to teach children with autism to comply. Since this is such a huge issue in our family, I really enjoyed the chance to learn some proven methods for helping a child change their behavior. Pulling apart the behavior to look at the cause is extremely important, (which I knew and have been trying to do, but Rachel had some awesome ways to do so) and the correct understanding of reinforcement and punishment (and the difference between them) is huge. The entire session was kind of like meeting Super Nanny and getting a step-by-step as to how she handles the kids. Rachel didn't have an awesome British accent, but her help was extremely valuable. She even gave us all little goodie bags full of toys! After practicing reactions to children's undesired behavior with peers, which felt cheesy but was helpful for some, we got to take home all of  the "reinforcers" (toys) to use with the children in our own lives. Johnny already has two of them and he is loving it!

I skipped out on my third session on Tuesday, which was one I really wanted to attend, (The new DSM-5 breakdown) but I couldn't handle being there anymore. It looks as though the webcast was actually recorded as well and will be available for me to watch at home later. Yay!

Yesterday (Wednesday) morning's session was with Dr. Timothy Vollmer, and was another one of my favorites so far. "Antecedent Interventions and Considerations to Reduce Problem Behavior" really explored several methods, including some to handle dangerous situations in order to immediately shut down the undesired behavior. Since my kid has some serious aggression issues, it was quite helpful. When I'm getting hit and kicked repeatedly and he is hitting or biting himself, it is key that I have a way to stop the dangerous situation. I know Johnny doesn't get nearly as intense as some other kids, but it is still something that I need to be able to address with him. Vollmer is from the University of Florida and is himself the one who has done a lot of the research and case studies that have devised the methods that work best. A good bit of his presentation overlapped with things that Rachel had spoken about the day before, but he was able to provide yet another perspective. It is entertaining to hear these professionals bring to light the cause of many of the behaviors that are exhibited during problem instances, and it is helpful for me to know ways to accommodate and then coach Johnny to make different choices. 

As you read, I walked out of my second session of the day. Not wanting to take Johnny out of his classroom where he has been getting some of the only peer social interaction he has had all summer, I took the time to make some phone calls that are hard to make when he is under my feet. I had been told by a woman who runs the Stepping Stones program in two other counties that Johnny should have never been kicked to the curb with their summer camp. She said they are legally obligated to take him, despite his lack of full bathroom skills. She was mad! She got in contact with the woman who runs the local one for me, and I got a chance to talk to that lady. Apparently the director in Centre County had absolutely no idea that Johnny had been turned away, and she's mad too. She will be investigating the problem, and offered him a spot in their after school program this fall. She felt extremely bad that we've gone all summer unable to do much, and she said that measures will be taken against those who refused us. I didn't set out to get people in trouble, but I really do think that the issue needs to be addressed. My summer might have been so different! Too late now, but it would be good to make sure something like this doesn't happen to any other families.

I also got the contact information for the Assistant Director of Special Education for the State College Area School District. My mom was actually at a conference with her this week, and they got a chance to talk about Johnny's situation. She suggested I go to the IU10 for an assessment. I responded that I've been there, done that, and been told that he needs a GIEP (Gifted Individualized Education Plan) and not an IEP, but they don't grant those until Kindergarten at the absolute earliest. Most of the time it isn't done until 3rd grade. (Watch me!) Anyway, she then set me in the direction of finding a way to get Johnny into Easter Seal's preschool program this fall and leaving Matternville. While I will be really very sad to see Autumn go, I have been very frustrated with the preschool it's self and I will definitely take my kid wherever he needs to receive the help he needs. If he gets into Easter Seals, they will provide his additional services there during the school day! I am also being sent the contact information for some women who work with the early elementary school kids on the spectrum who aren't yet potty trained. While I have a session on potty training this afternoon, that will be some extremely welcome additional help!!! 

This morning, day 4, Stephen and I are sitting in the Social Skills for Higher Functioning Children session. Unfortunately, although it was listed as parent-friendly, it is almost entirely aimed at educational staff. I'll be honest, I stopped listening after the first 45 minutes. I don't think we will return to the room after the break that is coming up in a little bit. The session just isn't relevant to us. 

This afternoon we have the potty training session, as mentioned, as well as a group on collaboration between all educators and caregivers. It should be interesting to see how things go! For now-- I'll get a cappuccino!