B is for Birthday

B is for Birthday.  This year, we opted to combine Apollo and Phoenix's birthday parties together in order to save time and money for everyone involved.  We held it at Pete's Party Castle, which is where we had Apollo's last year. He calls it "Pizza Party Castle" but I would have to say it might be one of his favorite places to go play.  We had lots of last minute cancellations (including his best friends due to a car issue), but he still had fun regardless.  In fact, the only time I actually saw him was during cake and presents.  Other than that, he was in the dragon playground from arrival to departure.  he was so busy, I couldn't even get him to come out to ride the train! He seemed to get along well enough with all the kids who came, including a couple from his soccer team and several of his cousins.  He was disappointed that the cousin he is closest to couldn't make it, but he rebounded well from the disappointment.  And boy was he excited to blow out that "5" candle!  I can't believe my baby is 5! He loaded up on lots of great toys that he is enjoying immensely including Ninja Turtles, Legos, more Thomas tracks (this boys LOVES trains, hence the surprise when he wouldn't go ride one), a Pogo stick and a LeapReader.  He is a very loved little boy and he is showing me more and more each day that forcing myself to have the patience to deal with his autism is worth the effort.  When he's having a bad day, it is hard on all of us, but when he is having a good day - wow, there is no way to describe how a good day feels.  Think something along the lines of warm sunshine wrapped in a hug with a side of chocolate.  Whatever it is, all the bad days don't matter when that sweet little boy curls up on me (a rarity these days, he's not a cuddler) and tells me "I love you, momma."

(This is the daughter of a friend of mine with him.  He let her touch him.  He didn't get upset the whole time that she sat beside him, which was for the duration of the cake celebration.  We are making PROGRESS!)

 
B is for Behavior.  My grandmother (Grandmama) is, without exception, Apollo's best friend.  I think they are simply kindred souls, so they understand each other in a way that nobody else ever will.  Which is great for my little guy.  Over the last four months, he didn't get to see Grandmama nearly as much as he (and she and I) would have liked for him to and I think it really affected him.  Perhaps his missing her was part of his behavior problems, since they started getting worse shortly after Christmas.  Now that tax season is over (she has prepared them for a LONG time, we'll leave it at that), she is wanting him to come over once a week again and he is DELIGHTED.  I usually drop him off for a couple hours to get errands like grocery shopping done - and he is always giddy as a pig in mud when I pick him up.  His has gotten to visit her for a couple hours for the last two weeks and his behavior is markedly improved.  Whether that is Grandmama, his new medication or a combination remains to be seen.  I am leaning towards the latter since I believe the medication is helping, but I KNOW that seeing Grandmama is helping.  It's a win-win so far. He tells me everything he ate (which is usually an inordinate amount), everything he did and just about everything Grandmama said to him.  He is rarely as excited to tell me about his day as he is when he visits Grandmama.  He loves to walk in the woods with her and pretend.  He loves to eat peanut butter and jelly.  He loves to play in water (whether it be "swimming" in the bathrub or endlessly filling cups with water).  Then again, he was always my toddler that was splashing in the toilet.  His absolute favorite thing to do with Grandmama is to read books - an activity he could (and would) do absolutely all day if he were able.

B is for Books.  Apollo is a little bookworm.  Not that I am complaining - not one iota.  I want my children to be well-rounded, well-educated individuals.  My kids love books.  Apollo got a LeapFrog Tag (now known as LeapReader) for his birthday from me, along with half a dozen books I got on deep discount.  He has already run the rechargeable pen down 5 times in less than a week!  And his favorite book isn't even a story really - it's a Kindergarten readiness book I picked up on a whim.  He already knows everything in it, but he reads it cover to cover and does every activity, then starts over. His vocabulary is amazing for his age, but he rarely uses it.  We got a taste of it the other night.  I don't even remember exactly what it was he said, but it was clear and eloquently spoken, unlike the jumbled mumble he usually uses with us.  I can only imagine what he tells his stuffed and imaginary friends when he holes himself up in his room and disappears for hours.  We don't worry about him when he does this.  In fact, we encourage it because it grounds him.  It is his "reconnect" time with himself, which I am told is very important for the introverted.  Apollo, with few exceptions, is very much a hermit and keeps to himself.  Certain situations can pull him out of his shell a bit, but the more he is pulled out, the more he shuts down and inward in the following days.  It's almost like - the more he opens up, the more recovery time he needs.  So we let him be a hermit.  It's good for him - and it's good for us.  He is rarely quietly during that time though.  He is always babbling away every time we walk by his door, which remains closed during his recovery time.  He is quite the little scholar and public speaker when nobody is listening  - my little oxymoron.

D is for Doctor

D is for Doctor.  Today, Apollo had an appointment with a psychiatrist in an attempt to bring him to some semblance of normalcy. He was wild, he was completely unchained and he exhibited the exact kind of behaviors he does at home.  Why is this different?  From my experience, most children including my oldest, seem to become a completely different person around others.  I have teacher friends who tell me that the child they teach at school is not the child that parents are familiar with.  The children never act out in front of the doctor, so the doctor thinks you are making things up, that you are too weak to deal with normal behaviors or that you just don't understand your child.  My child went all out at the doctor today and showed his stripes - and his polka dots, his neon lights and the cacophony of his soundtrack.  He really put on quite a show - to the extent that the psychiatrist admonished me for not being strict enough with him.  To be honest, I was letting him out act out more than I do at home so that the doctor could SEE it, rather than take me at my word.  Apollo was being the naughty boy and momma's the one that got scolded.  At least someone else was able to see what I see, what I see on a daily basis and understand the need for a change.  Nobody can function on either side of this fence - Apollo on his side in his own little world and the rest of the family on our side.  Something has to give, somewhere for us to be able to function as a family rather than a family split by autism.


D is for Drug.  The dreaded 4 letter word when it comes to autism.  There aren't really any drugs out there designed to treat autism itself.  There are medications intended for other purposes to help manage some of the symptoms of autism, but there is no wonder drug for the disorder itself.  My hopes were to get Apollo's hyper-focus and his insomnia addresses first as these two symptoms are the most debilitating for him.  I'm not sure how well the doctor was listening, but I have adamantly stated that I wanted Apollo on as little as possible prescription-wise.  He has taken Melatonin in one form or another for over a year now because he has always had trouble falling and staying asleep.  We were currently up to 8 MG which is almost an adult dose, but still yielding only about 7 hours of sleep. Any less than that and he is an absolute terror.  Ideally, I realize he is never going to be a child that sleeps 12 hours - that is Orion and sometimes Phoenix.  An ideal number of hours for Apollo would be closer to 9, but anything is better than the 3-4 he gets without anything if left to his own devices.  On nights when he is exhausted and falls asleep before bedtime, he's always up and at 'em within hours, usually before I am even able to get to bed.  The psychiatrist prescribed him a blood-pressure medication that is also used to control some autism symptoms - in our case, the intense focus and insomnia.  He also recommended we drop his dosage of Melatonin back down to 5 MG, but to buy a different brand that is a slow release, so we will be trying them together starting Monday.  I started him on the new Melatonin tonight, so we will see how it works for us come morning.

D is for Diagnosis.  This is what I was hoping to see today, but alas, we still do not have anything definite.  He is still considered to be ASD, which means he is on the autism spectrum.  However, the spectrum is enormous and encompasses disorders from severe mental retardation all the way across to oppositional defiant disorder with hundreds of possibilities in between. He certainly doesn't seem to have any type of delays and is at least above-average in intelligence, so I still feel that we are looking at Asperger's, which is essentially a high-functioning autism characterized by high intelligence but little to no viable social skills.  He is very quirky, almost to a predictable level now.  I don't know if he is getting more predictable, or if I am getting better acquainted with his quirks.  Either way, I can often sense when he is about to have an issue and am able to circumvent with little fall out.  Not always though.  We still have many times each and every day when one of us loses our cool, one of us gets frustrated with the other and one of us cries.  It varies every time who is who.  I am just as often the one to cry as the one to get frustrated.  I don't even get embarrassed anymore.  Those days are long over.  That mom that blushes, cowers and apologizes to everyone because her child is having a mega-tantrum?  That won't be me.  Not now, not ever again.  My child is not an embarrassment.  He has challenges.   Sometimes he just doesn't know how to express himself or his emotions boil over because his little brain isn't wired to deal with them the way that yours or mine would.  Don't get me wrong, though.  Sometimes he's being a little brat and I will deal with him accordingly.  I am getting better with discerning between true autistic behavior and when he's putting on a show to get his way.  He isn't getting away with anything.  He is a very bright boy and he can be very loving, but he definitely marches to the beat of his own xylophone.  So don't give me that exasperated look.  I am trying to get out of here as quickly as I can.  I know he's being a twerp.  I know he's loud and I know he's annoying. I know.  Trust me, I know... but if you really want to get him to stop showing out?  Engage him... smile and ask him if he has a favorite Ninja Turtle - and be prepared to learn everything you ever wanted (and didn't!) to know about Ninja Turtles because that is his favorite right now and he knows almost everything about it.  And be glad you are only going to hear about it for the next 5 minutes, because I am going to hear about it for the next 5 days, nonstop.  His autism will ensure that I personally know everything there is to know about Ninja Turtles... and The Land Before Time ("Longnecks eat plants. Sharptooths are bad dinosaurs.  They eat other dinosaurs.  We have 8 Land Before Time movies. Dinosaurs were around a long time ago...") and any other topic that he truly takes an interest in because that is one of the quirks of autism, specifically Asperger's.  But at the end of the day, I would hope that everyone remembers (and sometimes I have to remind myself) - A is not for Autism, A is not for Asperger's, A is for Apollo...

P is for Perfect Storm

P is for Perfect Storm.  Mobile County schools are out for Spring Break - 9 glorious days of all 3 kids, all day, every day, screaming, crying...  They are SO over each other and everyone's patience is wearing thin, including mine.  There are only so many activities to keep these raving, rabid little rascals busy and I am running out of ideas.  The weather has been dismal at best, cancelling at least two events I had planned outdoors to get a break from the doom and gloom of being crammed indoors with each other.  Apollo's boundary-pushing would put Manifest Destiny-era Americans to shame.  He and I have played enough tug-o-war to last a second grade class an entire year!  And it has been over everything - meals, naps, bathroom, going outside, putting on shoes, sitting down, sitting still, not back-talking, listening when being spoken to... you name it, we've fought over it. Furthermore, there's been no soccer games or practice all week, so the boys have energy to spare and they are literally bouncing off the walls (no, really!  But that's another story for another day...).  When we've been able to, we've been running some drills in the backyard, but those times have been few and far between. We are on day 8 right now, but as I've taken a couple of days to gain some perspective on the events I am going to share with you, we are talking about days 5, 6 and 7- Exploreum Day, Recovery Day and World War 3 Day, respectively. 

P is for Play Date.  From the beginning of Spring Break, I had planned to take the boys downtown to the Exploreum to check out their 'Little Discoveries' series of science experiments for preschoolers.  It is technically open to ages 3-6, but Orion would normally miss it due to school.  Being Spring Break, it seemed a perfect opportunity to see if it would be something my boys would enjoy - and if it was something Apollo could tolerate.  We got there and headed straight for the Wharf of Wonder, the preschool area that includes a ball pit, a pirate ship and fish market and lots of little kid friendly toys like puzzles, letters blocks and a dress-up station.  As the experiment started, Apollo and Orion both found a seat and stared with their mouths open.  They barely even noticed when J&K showed up.  (This is the brother/sister pair that became Apollo's first friends.)  I hung back with Phoenix who was glued to a shape puzzle, happily proclaiming each shape and color.  Orion and Apollo watched the teacher mix colors, do an experiment with food color and milk and make ice cream!  And Apollo paid attention and sat in his original seat the WHOLE time.  When the 'Color Chemistry' lesson was over, Apollo came up to me and told me he had to go potty, so I told him okay and to give me a minute to get my friend to watch Orion and Phoenix while we ducked out to the bathroom.  It took me about 5 minutes to get the other two settled and I gathered up Apollo to go to the bathroom for him to declare, "I don't want to go."  I tried to gently pull him out of the Wharf of Wonder to go on to the bathroom because he was wearing suspenders and I knew it would take a couple extra minutes to get him out of his clothes and I was trying to avoid an accident.  Apollo started to cry, so I let go and let him go back to what he was doing. I walked back over to Phoenix to see what he was up to (again with the puzzles - I think the kid is trying to tell me something.) and not 5 minutes later, Apollo wandered up to me - with an ever-growing wet spot on his shorts.  He had peed his pants.  That essentially ended our trip and triggered a nuclear meltdown on Apollo's part.  Perhaps I reacted rashly by ending our outing immediately and by grumbling at Apollo publicly in front of his friends but there is more to this story, my friends.  This wasn't the first, second or even third time... this has become a regular thing...

P is for Pee... and Poop.  Two of Apollo's favorite new weapons.  The incident at the Exploreum was the 5th episode this week, including one on Easter.  I may have mentioned it in the E is for Easter blog, but if not, it happened that day too before we ever left the house.  He had wet pants that day until they dried.  Once we got home from the Exploreum, I allowed him to change his clothes into a dry set and it was nap time.  Two hours later, I heard Apollo cry out from his room and I went back there to find he had peed his clothes... again.  Now, this child has been potty trained for almost two years now, including nighttime trained.  When he was training, we had very few accidents, but since the beginning of this year, he has had more and more of them.  I know that sometimes children with special needs have trouble communicating their personal needs, but Apollo has NEVER had that problem, until now.  In fact, he has used it as an excuse to come out of his room during naptime and at night numerous times - as in twice a night for the last six months.  It's hard to tell when he really needs to go, but more often than not, we let him go.  Unless we are in the middle of something and cannot slip away to let him go "RIGHT NOW."  He always has to go "RIGHT NOW" in an insane, urgent emergency.  Then, half the time, he squirts a couple drops, smirks, and goes back to what he was doing before.  I will admit, I griped at him and told him that his behavior was unacceptable and sent him to bed early.  

P is for Preperation.  The next day, instead of a "recovery day", my mother took Apollo over to visit with my grandmother.  He used to visit with her fairly often and is very attached to her.  They are both hermits at heart, so I think it helps him to spend the day with a kindred spirit who (somehow) doesn't tire of his shenanigans.  At least she doesn't show it.  If you asked Apollo what his favorite place is, he would tell you "Grandmama (my grandmother, his great-grandmother)'s house."  So my mom took him over there with his bathing suit so he could spend some time with her while my mom shopped and I stayed home and cleaned up after Easter, rearranging some things as I went.  Things were fairly uneventful - he ate peanut butter & jelly (and I'm sure loads more, kid pigs out at Grandmama's house and she lets him) and went "swimming" in the bathtub for an hour.  In the three hours he was gone, I managed to get the whole front of the house reorganized, cleaned and de-Eastered.   It seems that when Apollo is outside of the house, whether it be going to the store with my mom or off on a visit, I get so much more done than when he is here.  Even when he is on a recovery day, I find myself constantly expecting him to decide he needs to do something and having to fight his impulses for the next 2 hours or until I can either get him refocused on something else - or he finds a way to do it.  So I end up never starting projects because I fear I won't finish them and I will have to start over anyway.  So I got a week's worth of cleaning done in a few hours and snagged a nap to prepare for the incoming storm cloud. From the moment he got back, I could tell he had a burr in his butt.  Apparently, he didn't want to leave Grandmama's house - and he was going to make everyone suffer.  I put him down for a nap and was startled from a nap by the loud squeal of the start of World War 3.

P is for Pullup.  Without going into extreme detail, the next 24 hours were a battle of wills - his versus mine.  Over the course of those 24 hours, he peed his pants twice more, pooped in a brand new pair of underwear and went into a diaper, went to bed early and then promptly pooped the diaper in the morning.   Not only did he poop in the diaper (the punishment is because I get tired of cleaning out underwear and he does this often lately - but if he can keep the diaper clean, he can have his underwear back - and he hates diapers), he took it off and was slinging it like a slingshot, slinging off bits of poop.   All without ever notifying me that he needed to go to the bathroom.  Unfortunately, what followed was not one of my finer moments - with any of the children.  Between not feeling well, being stressed out from the last several days with all of the kids cooped up together and going stir-crazy and the "last straw" button being firmly mashed by Apollo and his test of my strength as a parent, I snapped.  I yelled at Apollo, something I try not to do because it stresses everyone out and typically makes his behavior even more defiant.  Then Orion picked that exact moment to whine about life not being fair because he couldn't play a video game and I snapped at him too.  Even Phoenix decided to get mouthy and got his fair share of wrath.  Before it was said and done, all four of us were crying, my vision was blurring from the intense migraine that had overcome me and my patience was history.  A long nap did us all well and many apologies and hugs were shared once we all woke up.

P is for Perseverance.  I love my boys to the moon and back, but a momma can only take so much before her resolve dissolves into a puddle of failure. And this week, I failed everyone. I failed Apollo by not being strong enough to handle his defiance.  I failed Orion by letting Apollo's defiance wipe out my patience and losing my cool with him.  I failed Phoenix by yelling at him for absolutely no good reason, other than my head was pounding and he was pitching a toddler tantrum, which is nothing new.  I failed myself by being human enough to let the battle rattle me.  Supermom did not show up this week and it's showing.  This morning, Apollo woke up with a dry diaper and a better attitude, but I'm not ready to pack up the Pullups yet because when he sets his mind to something, he fights to win at any cost and this time - he's chosen to fight with the one thing I absolutely cannot handle.  If you think baby poop is bad, kid poop is a thousand times worse - it reeks to high heaven and the stench sticks to EVERYTHING.  It's one thing to smell it wafting out of the bathroom.  It is quite another thing entirely to be slapped in the face by a cloud of it. No matter how many baths or hand washings you endure, everything it touches retains an eau de poo. He has chosen to fight with a weapon of mass destruction and only time will tell who will win this battle - and what the fallout will be...

E is for Easter

E is for Easter.  Or Eostre. It really depends on who you ask.  The true meaning of Easter is different for every family and ours is no different.  As a secular family, Easter for us is about egg hunts, baskets loaded with trinkets and shreds of fake grass, chocolate bunnies and jellybeans, and most importantly, family.  I am also learning that any holiday has the potential to send my boy into a major meltdown.   The more activities and plans that are made, the more likely that meltdown is going to happen.  These days, I don't even make concrete plans because I don't know when a day may be a bad day.  And they happen.  It's not necessarily a daily thing and it's not necessarily the end of the world each time, but every little thing that strays from our plan has the potential to be catastrophic.  I am learning to be more patient.  I am learning to be more flexible.  And I am learning to be hyper-aware of the tiniest details that could send my sweet boy into a frenzy.

E is for Exploreum. The first egg hunt of the season for us was actually two weeks ago at the Gulf Coast Exploreum. The boys received a membership there as a Christmas gift from their grandma Angelia year before last.  We didn't use the membership as much as we should have, but the few times we were able to, Apollo seemed to really get into it and he had fun.  When it came time to renew, I struggled with the decision for 2 months before the boys made it for me.  They decided to break into their piggy banks and renew their membership themselves.  Something I am now thankful for as there is currently a dinosaur exhibit and a space exhibit is coming this summer.  Along with anytime access to the Exploreum, as members we are able to attend the special events for free.  This year, they hid 10,000 eggs throughout their exhibit halls and let the kids run loose and gather them up.  I took all three boys, fully expecting Apollo to become overwhelmed.  However, Apollo shone this day.  He gathered up enough eggs to fill his own bucket and halfway fill his brother's.  I wasn't able to see him hunt much because Phoenix decided he was going to dial in a tantrum when he was told he couldn't pick up the eggs before "go."  But Apollo... I was so proud of my little boy in that moment when he emerged from the ball pit with his bucket overflowing.  He got it.  He understood what I had told him - and he had gone for it.

E is for Exclamation. We left shortly after the egg hunt because Phoenix was still screaming.  (His tantrum ended up lasting 58 minutes exactly.  Fortunately, I have a strong resolve because of how long some of Apollo's tantrums can last.  My oldest, Orion, is also essentially immune to tantrums and can tune them out.)  I have a tradition to always snap pictures of the boys outside the Exploreum in different places.  In fact, this day is where the current profile picture of Apollo came from - but it was a challenge getting any pictures at all as Apollo believed he was being attacked by a mosquito hawk.  If you're from the South, you know we call these 'Gallonippers' and Apollo is utterly terrified of them.  I have no clue why, but if one comes remotely near him, it's over  His resolve melts into a puddle and he absolutely freaks out.  I got a couple of pictures before 6 "attacked" him and all I heard from then until we got to the car was "I don't like the 'Nippers!" His entire body went rigid, he closed his eyes and  he clung to me.  He has never literally been attacked by any kind of bug, but I found that lately, he has begun exhibiting some pretty exotic "fears."  Below is a picture of Apollo before the "attack."

E is for Explorer.  In a break from tradition this year, we canceled our participation in 3 different egg hunts.  Right now, Apollo is in too fragile a state to really attempt a full day of activities.  Too much stimulation, the wrong sound, too strong a smell... anything could set him off.  I had originally planned to drive over to Pensacola to meet up with old friends to do a small egg hunt with their children. Also planned that day was a trip to see the Easter Bunny, lunch at Chick Fil A and attending a HUGE egg hunt with a specially designated special needs area.  However, thunderstorms threatened and it's an hour drive over a busy interstate and two 3 mile long bridges to get to the location of the smaller egg hunt.  With Apollo's mood proving as unpredictable and possibly as tumultuous as a thunderstorm, we cancelled.  It saddened me to let my oldest down because he knew about the plans and the look on his face broke my heart.  It ended up being the right decision, though, because Apollo did not have a good day after all.  He got into 3 separate fights with his brothers, he broke into his closet twice and his ears were turned off while he couldn't seem to do the same to his mouth.  He back-talked and spat out defiance all afternoon until I finally forced him to take a nap.  I don't usually force him into a nap, but on some days, I can only take so much before enough is enough.  Once he (and his brothers - everybody had a mouth by naptime so everybody took a nap) got up, the family went out to eat at Sonny's BBQ where he was very well behaved.  He spoke clearly and made decisions about his meal.  He colored quietly and didn't spill his drink.  He did have to get up to go to the bathroom, but it was only once and not a ritual thing like it often becomes.  Unbeknownst to the boys, I had already hidden 60 translucent eggs filled with glow sticks.  By the time we got home, it was twilight and it was such a proud moment for me as my little loves hunted TOGETHER.  They helped each other, they shared, they laughed and they had fun.  

 

E is for Endurance.  Following the glow egg hunt, things went downhill quickly.  Everyone was tired, everyone was grumpy, and everyone decided they were not going to bed.   By 11 o'clock, Orion and Phoenix had given up and finally fallen asleep, but the Easter Bunny was getting tired of waiting.  Apollo had been up for this or that a half dozen times - to potty or get water or he was scared.  It is always something and bedtime is always a battle.  Usually, Apollo takes a 5mg dose of Melatonin and falls asleep while watching a movie.  This night, he had already watched two and was showing no signs of slowing down.  I hate to give him the Melatonin in the first place, but without it, he would stay awake for days.  Without sleep, his episodes happen more frequently, so it is a give and take.  I choose to give my boy a chance to have good days.  I take the fact that I have to medicate him to an extent to give him a good quality of life.  I have thus far fought prescription medication, but we are quickly approaching the end of those days.  It breaks my heart to know that I am going to have to medicate Apollo, but what kind of parent would I be if I didn't give him his best chance?  I have come to the conclusion that something needs to be done for him.  He has an appointment April 16 and we will see at that time what is recommended.  The Easter Bunny finally visited around 12:30 AM and Apollo was STILL up, but he only went on one more potty break and by 1 AM, the Easter Bunny was able to go to bed. Apollo's is the green one in the middle.  His favorite Ninja Turtle is Raphael.

E is for Egg Hunt.  After tearing into their baskets and cinnamon raisin french toast casserole, we headed over to my grandmother's house for the annual Easter egg hunt.  I do it every year and every year, it has a shtick.  Last year, the kids had to hunt certain color eggs to gather their clues to their prize eggs.  The year before, they put together puzzles that were hidden in the eggs and had a clue on the back to a prize egg. This year, there were more than our standard 6 kids planned, so I did a BIG hunt.  As in 450+ eggs in all colors with 6 prize eggs.  Apollo held his own yet again and had to dump his bucket twice into plastic bags.  There were moments... getting dressed is always hard for Apollo.  Today, the boys wore suspenders.  He apparently couldn't get them down and peed his pants.  I am fairly certain he did it in defiance because when I left him in the bathroom, he had his shorts pushed down and his shirt pulled up.  But neither here nor there, there was no time to change and nothing else to coordinate his brothers, so he went in wet pants.  They dried fairly quickly, but hopefully it made an impact on him.  The whole Easter experience is over now as the boys are all snuggled in bed asleep, but there were numerous other incidents indicating to me that Apollo's meltdown meter is nearly full and we all need a break - us from him, and him from the world.  I have thus cancelled all plans for Monday and we are going to hang around the house to give him the chance to regroup.  It's a big, mean, scary world out there and Apollo doesn't process it the same way we do and sometimes, I have to be reminded that he is doing the best he can, as am I.  

A is for Apollo

   A is for Apollo. This is a sentiment that I have been reminded of since my little man could talk. At just shy of two years old, my chubby-cheeked little monster told me "A is for Apollo." It has been nearly 3 years since he first told me this and I still find that sometimes I have to remind myself. Some days, it's harder than others to remember that he is my little ray of sunshine. Some days, it's as if those other "A" words don't exist. The good moments and days far outnumber the bad, but the bad... they can be BAD - as in Big Bad Wolf bad. Those are the days I find myself tested and tried before a jury of one - a sweet-natured, brilliant little ray of sunshine aptly named after the Greek god of the sun, the arts and music. A boy who, despite being the middle child in a set of three, is a natural-born hermit who would rather stare at the wall than make eye contact with you, or her, or him, or anyone for that matter. Unless you have something he wants, he will look THROUGH you rather than at you. A is for Apollo.

   Apollo's gentle brown eyes, often fixed in a vacant stare, belie his intelligence. He wasn't allowed in the public Pre-Kindergarten program because, at nearly 4, he could add. A skill, which I may add, he taught himself AND his older brother nearly 6 months before. At the time, he could also count to 50 (15 in Spanish), subtract, spell, write and read. He loves to make noise - that child can raise a racket. He enjoys digging in the dirt. He tolerates playing with his brothers for short spurts of time, but he took to the television like a duck to water and he fell fanatically in love with Team Umizoomi and Dora. Looking back, I realize that his hyper-focus on those two shows is likely how he pieced together the puzzle of numbers so early and why he was able to name off things in Spanish, even though I had never actively taught him Spanish. But A is not for Aptitude, A is for Apollo.

   Apollo was labeled "scary smart" by a behavior therapist, but my sweet little boy has fewer social skills than a fly. I can count on one hand the children with whom he willingly plays. I don't even need a whole hand. The number is 2. A sister and brother pair he met in an art class a year and a half ago. A pair that he doesn't see as often as I would like, but whom he falls immediately back into step with every time he sees them. I don't know why he allowed an attachment to them, but I am thankful for it every time they play together. We usually have a couple good days following a play date. The other foot always falls eventually, but for a brief moment in time, his disinterest in other children subsides and he will talk about what he did with them, he will interact better with his brothers and he will show the slightest semblance of what other parents may take for granted - a tendency for a child to be a social butterfly and bloom in the brightest colors in the presence of others. But not Apollo. He shines, just not in the way one would expect. Apollo is not a simple puzzle that can be pieced together once and then subsequently from memory or rational deduction. Rational is not a word we use often when describing my sweet boy, either when describing his own behavior or how best to interact with him. He may hide with his head in the clouds 95% of the time, but when the right activity, the right person, or the right nuance can bring him back to Earth, he SHINES. Brighter than the brightest star. But A is not for Antisocial, A is for Apollo.

   By the time Apollo was 2, I realized he did things differently than my oldest, who was 19 months old when Apollo was born. Apollo was quirky and had odd ways of doing things. Stuffed animals had to be in a certain place on his bed. He ate methodically, always finishing all of something before moving on to the next. At first, it seemed that he simply had a different personality type than my oldest, Orion. Orion was very type-A, in your face, needy and a social genius. Very few people can resist Orion's charms and that was apparent from the time he was born. Apollo handled people differently. Rather, he ignored them. We thought he was just a quiet child, less needy, less clingy. He was two and a half years old when his father and I split and just shy of four the last time he saw his father. My first "aha" moment came shortly after his father left the home. We had moved in with my parents and they had a sliding glass door, which was something our house had not had. He began to obsess over tapping the glass with his knuckle every time he would walk past it. It was never loud, never pronounced, but it HAD to happen or he became visibly and audibly upset. I began to bring up the quirky behavior to his pediatrician, voicing a concern over possible causes. I was told that I was overthinking things and that he was too young to be able to make a diagnosis. I was told to have him tested when he was in school. His quirks began to multiply - this is when his hyperfocus really manifested itself. Apollo would request to watch the same show 12 times in a row and would have an argumentative temper-tantrum if he was denied. My new role became a Pacifist to keep the peace for the rest of the family. But A is not for Abnormal, A is for Apollo.

   I did my research and brought up my concerns to a new pediatrician. To my surprise, this one referred Apollo to counseling and mental health services. The first step was to talk, to attempt behavior adjustment, to try to understand why he was eccentric and how to combat it. What followed was a rough summer of a continual descent into full-fledged outlandishness. We would go to the park and Apollo would talk to himself. We would go to the library and Apollo would have a meltdown if it was too loud or too quiet. His brothers would want to change the channel on the TV and he would shriek if they interrupted something he was watching - no matter if he had never seen it or if he had seen it a hundred times. Any time his carefully thought-out plan was interrupted, he would launch into a nuclear meltdown, pacified only by being put into his room and ignored while he cried out the frustration. Last fall, I pushed for my little ray of sunshine to be tested to find out if the cause of his quirkiness was due to him being on the spectrum. The preliminary test came back as positive. My world stopped for a brief moment and then crashed down on top of me. It was a relief to have something resembling an answer, but scary at the same time. Simply being on the spectrum is far from definitive. It simply means that Apollo is different. Not broken, but different. It means that my quiet, intense, artsy little boy has Autism. But A is not for Autism, A is for Apollo.

A is not for Asperger's - Apollo's likely diagnosis following more testing - A is for Apollo.
A is not for Asinine - how some of his behaviors appear to other people - A is for Apollo.
A is not for Abrupt - how Apollo comes across to many as he is prone to interrupt - A is for Apollo.
A is not for Aggressive - how Apollo gets when he doesn't get his way - A is for Apollo.
A is not for Acidic or Acute or Aimless or Amuck or Apathetic or Austere - A is for Apollo.

   April is Autism Awareness Month and I found it fitting to start my blog about our journey on April 1st. Apollo is due for further testing on April 16 to make a definitive determination of his diagnosis. At this time, the doctors may decide that he is not on the spectrum after all. He may be diagnosed with nothing. He may be diagnosed with another disorder. He may be diagnosed with Asperger's syndrome -a diagnosis that likely should have been applied to Abraham Lincoln, Albert Einstein, Benjamin Franklin, Emily Dickinson, George Washington, Mark Twain, Isaac Newton, Thomas Edison, Mozart, Nikola Tesla, Bill Gates, Thomas Jefferson and Vincent Van Gogh, among others. It's a diagnosis, not a disaster. We shouldn't hide from it. It may help us find the right door to open to get into Apollo's mind and to let him out - to help him function in a world he doesn't understand and to help him interact with a world that doesn't understand him. Apollo is not defined by Autism and Autism does not define Apollo. He is not an autistic child - he is a child with Autism.  But A is not for Autism, A is for Apollo.