Acute Partial: The Note, the School, the Heartbreak, the New Fears

This is one of those times when I have so much to say but I have no idea where exactly to begin.  That's probably why it has taken me so long to sit down and start writing this post to update you all on why my page has been so quiet.

You have all heard me in the past talk about how Sparky has had some aggressive behaviors, both towards others and himself.  You've heard me talk about our struggles to find the right medications that will help him not harm him.  You've heard me talk about SIBs so severe he was bleeding daily.

For the most part we did get a handle on those things.  Over the summer we saw very little of anything of concern.  Then 6th grade started.  Middle school.  The whole world just went upside down....

Towards the end of October I showed up for what I thought would be a routine, run-of-the-mill, IEP meeting.  The kiddo was really struggling in school so I wanted to address several things, including homework and his placement.  As usual, I had already expressed my concerns to the school so they were already coming up with ideas.  In an interesting twist, my mom was going to attend her first IEP meeting ever with me, just to see what it was all about.  As my mom usually is, she was running late but not by much so we went ahead and started the meeting.

Before anything was said, anything was addressed, anything was even handed out, I was told that something happened that day that they thought I should be aware of.  They then slipped a piece of paper across the table to me.  It was a step by step written plan outlining (somewhat vaguely mind you) how to get rid of homework.  The note talked about harming the principal as a final step.

Huh.

They didn't want to address it until after the meeting so the IEP meeting went on.  I showed my mom the note when she arrived and everyone re-introduced themselves for her benefit.  The principal, not surprisingly, I feel made a total ass of himself and showed me how little he knew about these kiddos in the shortest amount of time I've EVER seen.  First impressions ARE everything!

A major concern for me was homework.  I can't spend over two hours a night trying to fight him through it. I refuse.  It does nothing to help him learn and makes our home life downright miserable.  When talking about that the principal chimed in saying that it should never take a student more than two hours to complete homework.  Ever.  I said that is all well and good for typical children, but that isn't the case with children like mine.  We have other things going on at home: therapy, breakdowns from the school day, chores, etc.  We deal with a lot of behavior because that's where the kiddos feel comfy and fall apart.  He went off on a tangent, repeating himself, that it should not take more than half an hour for ANY child to complete homework.  There isn't ANY reason for that to happen.

I nearly went across the table... Thank you so much for showing me HOW LITTLE you know.  Really, I appreciate it.  This will help me later in the meeting.  I promise.

Moving on.  The teachers, recognizing and knowing just a wee bit more than he did, made the adjustment that since homework really wasn't worth a lot of points anyway (just two) and it would not affect his overall grade if he never did it, said that as long as he attempted it they would allow it, just let them know.  They all told me to not spend a lot of time on it because they didn't want him to stress about it too much, especially since he was already struggling.

If I haven't mentioned it yet, I love his teachers.  Moving on.

We finally get to the end of the meeting.  The one time in my life that I would have been arrested if my mama wasn't there holding me back....

Non-essential people were allowed to leave (like the reg ed teacher).  So it was me, my mother, the AS teacher, school psych sub (school psych literally just went on leave), the principal, and my son's behavioral specialist.

Cue "Jaws" music. No joke.

The principal wanted to see my son so he was called in and was seated across the table from him.  The principal, in the nastiest most asshole tone I've EVER heard used with any student asked my son what that note was all about.  My son simply said that he was upset over homework because it was too hard and he didn't want to do it.  The principal, in the same nasty tone (seriously, who the fuck uses a nasty, condescending tone with a typical student let alone a special needs one?) asked my son if he thought the principal appreciated that.  My son said no, he was just upset about the homework.  The principal asked my son if he even knew who the principal was.  My son said no (cause really, he didn't....).  The principal then told Sparky that it was him.  My son, already visibly upset, went to get up (to leave? To attack? The world will never know because....) but our behavior specialist, who was right next to him sat him back down and told him we just needed to talk about the note.  The principal will swear that Sparky said "Now I know what I need to do," and was going to go after him.  I would have been more interested in what my son was ACTUALLY going to do without assumptions being involved.

My son was allowed to leave after a few minutes (Principal, yelling: "Get him out of here, we aren't getting anywhere with this!") and his former AS teacher/new Director of Special Ed sat with him in the office.  The principal, bless his heart.... took this moment to make such an impression on me that I was ready to be arrested in the defense of my son.

He looks at me and flat out tells me that he would NOT hesitate to call the police and have my son arrested for threats.  He went off on a 20 minute tangent about how he has a bad back and will not risk further injury.  So if he has to call the cops he will.... (You get the idea. For TWENTY DAMN MINUTES!)

I damn near went over the table at the guy....  He wants to do everything he can to help Sparky but won't hesitate to call the police on a harmless child?  Yeah, cause that isn't contradictory....

Let me give you this picture.  This guy is well over 6 feet tall.  He's solid.  I'm sure he's really great at what he does and is an excellent principal.  I have no doubts to his qualifications (just to his knowledge of special needs kiddos and bedside manner).  But when this very large dude threatens an 11 year old, 4 foot 7, maybe 100lbs kid.... Yeah, I take issue with that.  My son is maybe half this guy's size and can barely lift the cat.  Who's the real threat here?  (I saw him a few days later and he recanted, probably out of guilt.... I still don't appreciate his attitude.)

Moving on.

I ended up being forced to call Crisis Services (our local hotline for people who are a threat to themselves or others) when I got him home.  So I did.  They had me bring him in for an evaluation.  At this point my son is so revved up over everything he's just not coming down.  Now he's really mad at the principal...  Crisis wasn't sure what to do with him so we had to present him to the local hospital.

Can you see where this is going yet?  Escalation at it's finest.....

It is now 6pm, neither of us have eaten, and the cranky just continues.....

So here we are in the ER.  Just where I want to spend my Monday night.  At this point my son is just crying and hating on everything.  The ER psych doc spends two hours trying to figure out what to do with him.  He took this long time to see if Sparky would deescalate any.  Naturally, he didn't.  It got to the point where I was told that I was not allowed to leave the hospital with him, they would have to admit him.

I literally felt my world come to a screeching halt.  Not take him home?  They won't LET me take him home?  Why can't I take him home?  He's MY kid!  How can I not go home with him???

Sparky starts texting Grandma, upset as can be, convinced he's never going to see anyone he loves again.  Grandma is trying to get out of her meeting or wherever she is (like I can remember now) to get there for him.  She's talking to him, trying to calm him down.  I'm just a pile of goo.  Trying not to cry.  Trying to keep composed.  If I fall to pieces it will just be that much harder on the kiddo.  They tell me that he can take a couple personal items with him.  He chooses his red blanket (for our snuggles), Racky the racoon (so he'd have a friend), and the bracelet I made for him (so I'd be with him).  (Tell me that doesn't tug at you....)

While we were in various stages of disaster the doctor was trying to move beds around in the hospital to keep him local instead of sending him over two hours away.  The student doc also raided the employee fridge at this time to try and find something for the poor child to eat.  Finally they manage to move the beds around and about 9pm they take him back.

My world completely shattered.

Nothing could ever prepare you for the moment that your child is thought to be such a danger that he ends up in the hospital.  I am told they will evaluate him the next day and the doctor who runs the ward will give me a call.  They hand me his clothes and send me on my way.

Ever feel like you are trapped in a void?  Where darkness just swirls around you, spinning, spinning, spinning, and you can't stop it?  Where you are just completely and totally hopeless?  Frozen?  Unable to think, to process, to move, to comprehend?

That's where I was.

Right after, my dad calls me demanding to know where I am.  He's pissed to high heaven that they told him at the front desk we weren't there and they wouldn't allow him to see us.  He starts yelling about how he wants the kiddo moved to a different hospital and how he doesn't belong there anyway.  As if I didn't know that...  My mom finally arrives with the items he requested.  We are allowed up to the floor, just off the elevators.  The nurse comes out from behind a heavy locked door, takes the items, and dismisses us.

Ouch.

When I got back to the car, I don't think I ever cried so much.  Ever.

I went home, to my empty house, sat in his room, and cried some more.  Strike called several times to check on me.  By the time Joker (my new guy) got there, I had nothing left.

Visiting hours were between 6pm and 8pm.  You better believe my parents and I were there.  I took him his favorite books, minecraft plushes, and some clothes that next day.  The place was like a prison....  I did speak to the doctor (psych) and she flat out told me that my son DID NOT belong there.  Oh thank god.... But she couldn't release him yet.  Naturally.  She wanted to talk to his psych first because she felt some medication adjustments were warranted and she wanted to add an ADHD medication.  In a ironic twist, I had just filled a new ADHD med the weekend before but hadn't gotten a chance to start it yet.  So she got all excited and went ahead and started it.  By Friday afternoon I was racing to the hospital with the Director of Special Ed (who was a god send as his teacher and has remained so....) to break him out!

The psych felt he was better at home since she knew he wasn't a threat.  She said his note was too vague to really be considered one.  Being in the hospital was just over kill in a sense and not what he needed.  I love validation....

I was in such a hurry I forgot shoes and a jacket.... But ask me if I cared!  I carried his heavy butt right out of there!  He even wore my jacket!  His first phone call was to Grandma, "Grandma? I broke out of there!!!"

We still find the humor in everything.  As we do. :)

The kiddo did not return to school, however.  It was recommended he attend Acute Partial Hospitalization with the Barber National Institute for the usual term of 15 days.  We had the intake that following Monday and he started on Tuesday.

Acute Partial Hospitalization was amazing.  The staff was warm, friendly, and just fantastic to work with.  The psychologist there was just phenomenal.  He and I were just on the same page with everything.  He got it.  He understood everything.  He was very caring and sensitive.  Just... Amazing guy.

Now the Acute Partial program runs for 15 week days, so basically 3 weeks.  About halfway through we added a new prescription to help stabilize the kiddo's mood.  Oh did things get interesting...  My insurance company refused to pay for the new medication, claiming that we had a different primary insurance.  Insurance that I haven't had since March of last year...  So, basically, they didn't feel like paying for a medication that was $1000/month because they wanted to be cheap asses.  I spent over a week talking to the insurance company daily as did the folks at Acute trying to get them to correct this.  Every. Single. Day.  It was just absurd.  It was taking so long that they had to extend my son's stay at Acute for another 15 days!  I kept telling the folks at the insurance company that the hospital couldn't release him until he got this medication.  I finally, finally, got some guy to listen to me and he put the change through.  By then we were already a week into the second term of Acute.  Oy.

To make a long story short, just repeat the last paragraph for when they wanted to up his dose of that medication....

Why do they have to make this so friggin hard?!?!?!  They even tried to act like they were doing me a favor by approving it "just this once." Yeah..... Moving on.

December 9th was Sparky's last day at Acute.  December 10th, he was to return to school.  The Friday before I met with the school and took my whole new team of people with me.  The director of Acute, our new Blended Case Manager (BCM), the recommendations of the new psych (who amazingly agreed to keep the kiddo on in his private practice!!!!), and my behavior specialist/mobile therapist.

It was the most amazing meeting I've ever seen.  The principal sat there with his mouth closed.  The Sped director took everything down.  The teachers modified his homework.  They agreed to call me about everything.  The IEP does not say the police will be called.... Oh it was marvelous!  The homework modification was simple enough: he would be given 3 questions to chose from in each class and he would just have to complete one of the three.  This way he was still doing homework but it gave him choices and would make it easier for him to manage.  In time, we would increase that at MY discretion.  Boom.  They wrote a multi-step plan on what to do if the kiddo made further threats and even designated "safe" people for him to be taken to so he could talk to them and deescalate.  The principal is most notably not one of them.  Boom.  He would get unlimited breaks as needed and each classroom would have a designated "safe" area for him to take a break in.  This way when he got overwhelmed or frustrated he could easily walk away and process things and calm down.  Changes to this would be made at.... MY discretion.  Finally, he would be supervised 100% of the time from the second he steps off the bus to the second he steps back on.  This was to keep him safe (as well as others) in case something happened.  I was (and still am) terrified that something will happen and will be misconstrued and I'll have a monster mess on my hands.  This will help keep that from happening since there is now a designated person who stays with him literally every second of his day.  Even during transitions between classes.  He is literally always with a qualified adult.  This would only be changed at.... (wait for it....) MY discretion.  The Acute director and I left that meeting feeling much better about his return.

There have been many hiccups since his return as he's made several verbal threats, one more written one, and last week tried to get into the office, but overall it's been pretty successful.  After he made two threats in one day against both principals his psych decided he may need to go back to Acute.  After he tried to get into the office last week, that pretty much got set in stone.  He hasn't returned yet as there are some kinks to work out and we are hoping the school can iron it out, but we shall see.  According to his AS teacher they feel perfectly safe with him there since they are supervising him the entire time he is there.  So they have no concerns about him actually being able to do anything.  We have another meeting on Thursday that will include the same group of people to see if the school can meet the demands that Sparky presents. If this is not successful then he will likely be back in Acute for another 15 day term.  We are hoping for the best but we shall see.

It's a struggle.  Every single day.  The kiddo came out of Acute with several more DXs.  He already had the Autistic, Anxiety, and ADHD.  He came out with the added ones of Intellectual Disability (the new DSM-V rules out IQ as a factor, it's all functionality now), Mood Disorder-NOS, and PTSD.  He has started Trauma Based Therapy already to address the PTSD that is suspected to originate from the car accident and from the lady who assaulted him on the beach.  Hopefully this provides us with some answers and him with some closure.  Neither incident was addressed with him because our behavior specialist at the time was terrible and ignored these events and since the kiddo was still non-verbal there is no telling how he processed what happened.

I have so many new fears for the future.  What if he keeps making these threats?  When he's 18 years old no one is going to care how harmless he really is.  No one.  He'll end up in lots of trouble and not understand why.  Even now it seems he doesn't really understand just how serious these threats and actions are.  He just doesn't understand the impact of it or the very real, severe consequences.  I have new fears that he will never be able live alone and have his own life.  Up until now I was certain we were going to make our way easily to that place.  After all, we have six years to get there.  Now I'm not so sure that will be attainable.  It seems he will always have to be closely supervised.  He already hates his meds and wants off of them.  He doesn't understand how much they actually help. 

Some things have changed as a result, such as his access to electronics.  He now has to earn points to play with them.  He can earn however many points he can and he has to cash them in to play.  Even then there are restrictions on that as far as time limits and when he can do it.  He hates it but he abides by it.  This has resulted in a lot of him sitting on the couch staring at me because he doesn't know what else to do.  At first it seemed easier as he'd break out his Lego's or a book.  Now he's bored more often than not despite an entire playroom of toys.  Just a few minutes ago I asked him to go find something in that room to play with because he couldn't just stare at me like he was.  So he came down dressed as a pirate to stare at me.  Perhaps I should have been more clear... Haha!  It has lead to more compliance and better behavior because he knows he can lose points too.  I started this two weeks ago after the double threat so last week he lost points with the threats he made.  He loses a fair chunk equaling at least a half hour of play plus he loses a couple days of electronic use entirely.  It has been pretty effective though, despite the couch staring.

We shall see where all this ultimately leads.  Hopefully the road will be sunny at the end and I believe it can be.  It's just a long road right now so sometimes it's difficult to see.  But as I always say, we adjust, we adapt, we overcome.  And we shall continue to do so for as long as we must.

The Day I Lost Him

With all the influx of news of wandering and the abuse the Lynch family is receiving over their precious baby, I can't help but get upset.

Don't judge unless you know. Don't judge unless you've been there. Quit telling Neil Armstrong what it's like to be on the moon.

Ok. Maybe you don't know Mr. Armstrong but it is essentially what is happening.

These kiddos make professional escape artists look like amateurs.

My son wanders. He has along history of elopement from the time he was 2 and could walk off. He knows no fear. He loves water and we happen to live next to a rather giant body of it up here in the northeast corner of the country. So close, in fact, I could throw a rock into one of the Great Lakes. He knows how to swim. He attended the local YMCA for 8 years. His Autistic Support class at school also goes swimming once a week during the year. It's not fool proof, but it's a step in the right direction.

Two years ago, I lost him. Heck, all 5 of us in the house lost him and 3 of them were fireman. We were out in my sister's neck of the woods at her friend's house while sis's husband and the friend's hubby looked at my SUV. My sister, her friend FFK (who was pregnant at the time), me and our collective troop of kiddos hung out in the house. A and I had never been there before, but knew the people who lived there (FFK and her hubby FFM) We were there for a couple of hours without incident.

We were huddled around the kitchen island (the kitchen was an open space with the dining room and living room) while the kids all played in the living room just a couple of feet away. A has always had a love/hate relationship with my nephew Z. It goes way back to when Z was little (he is 2 years younger than A) and how he has ADHD and always wanted to play (he was a bit too intense for A) and A very much wanted to be left be. Naturally.

Some type of altercation happened between A and Z and both got yelled at by me. One was put on one couch, the other was put on another couch, and time out ensued. A was seething. At this point I don't recall what happened or why he was mad. But the kiddo was very upset (part of the reason for the time out, to help him calm down).

Then it happened. No warning. No sound. It just happened. I blinked and he disappeared. My sister said something to me, I turned to answer, when I turned back just a few seconds later, he was missing. I figured he went to the bathroom or went to another room to get away from Z. A quick bathroom check... No. So we check the room downstairs... No. Garage... No. Well, crap... We go outside.

He's nowhere to be seen. We had been calling his name but he is not answering (he was capable).

5 minutes....

We check the pool. We check the house again, around furniture, closets, under the couch (seriously, you'd be surprised where they'll squeeze into), the bedrooms. Nothing. I go back outside while FFK continues to search the house. My sister joins me shortly after. (FFM and BIL- also a FF- are out in my car test driving it). We walk around the house and check the neighbor's yards, calling his name. Nothing.

10  minutes....

Panic sets in. Where is my son? Why won't he answer? How far could he have traveled? I can see across the fields surrounding the house and I see nothing. The forests (we were in the countryside) are beyond the fields on each side. A major roadway is off to the north. Could he have made it to the woods that quickly? Could someone have picked him up off the road that soon? I start walking. I'm screaming his name...

15 minutes....

Still nothing. FFK is still searching the house. Since she's pregnant she got left to mind the house and kids and watch to see if he comes back. She keeps searching the house. My sister is traveling in the opposite direction of me. She spots her husband on the roadway but can't reach him, he's too far and cell service is bad in the area. Should I call the police? Will they think I'm a bad mother? Where is my son? Why did he run away from me? Could he have made it to the woods? What if he get's hurt? What if we can't find him? He'll never survive the night alone...

20 minutes...

I'm in a full panic. I get a text message out to M. He can't get to me but asks me to keep him posted. Grandma has been called (I don't remember by who). She's out of town so she can't help. I'm still screaming my son's name. Walking across the field towards a baseball field. Is he hiding in the dugout? Why won't he answer? Where is he? Why? Why? Why?

25 minutes...

M asks for an update. Still nothing. I'm still walking. Screaming. Now I'm crying. Should I call the police? Search and rescue? What if they say I'm a bad mother? What if they take him away from me? I'm with the very firemen who would search for him... If BIL wants to bring in reinforcements, ok. I love my son! I am a good mother! Why did he run off on me?

30 minutes...

I'm crying. I'm hoarse. I can barely get his name across my lips. I'm still walking. Still searching. Sobbing. Where can he be? Is he in the woods? Why won't he answer? Did someone take him? He'll never survive the night.... My mind is racing with grotesque images and every worst case scenario... Wolves.... Bears... Creeks.... Strangers....

35 minutes...

M messages me again. Do I need him? He's still delayed. Sis gets BIL. BIL and FFM start driving around the roadways looking for him, they hadn't seen him yet. FFK says he's still not around the house. Another friend joins the search and goes another direction. I can barely yell his name. Grief has taken over. Am I a bad mother? No! Stop thinking that!

40 minutes...

I can barely move. I can't see through my tears. I'm still walking... I'm on the verge of becoming a useless heap in someone's field. Where is my son? Why can't we find him? BIL doesn't see him on the roads. They keep looking. He'll never survive the night... Will they take my son away? Why did he do this? Why did he run? Where is he? Why can't I find him?

45 minutes...

I'm in the field. I can't move. I can't see. I could have been crawling at that point for all I know. Panic and grief have completely taken over... I'm lost. I feel hopeless. I feel like he's gone...

Suddenly I hear my name. The friend who joined the search is running towards me with the house phone. He's yelling. Running full speed to me.

They found him.

Words cannot describe how I felt. Where did they find him? Is he ok? Why did he do it?

I flew back to the house... I was completely overcome with a mix of relief, joy, and (I admit) anger.

Sheer luck brought him back to me. Yes, I said it, LUCK. FFK found him when she caught him sneaking back into the house.

I hugged him. I hugged the stuffing out of that kid. I'm pretty sure I hugged him so tight his eyes were threatening to pop out of his head. I cried some more. I asked him why he didn't answer me, why he didn't respond when he heard his name. I was angry. I was upset. I was hurt. He sat there, mute, unanswering. He didn't know why. Or at least (as I understand now) he had no way to tell me. He knew what he did. You could see it in his eyes. He kept saying he was sorry. He cried.

He was within 2 steps of me for the next 2 hours until we left. He had to remain within eyesight of me. Two.Steps.Away at most. This did mean he spent a considerable portion of his afternoon sitting on the garage floor.

Two years later, I know. I understand. He was mad. He was upset. He wanted to get away from being upset. So he walked off. He was taking a break in his mind. Escaping.

You think it won't happen to you, but then it does. We no longer have time outs. We now have time ins. If you don't know what that is, it's the exact opposite of a time out. Instead of him going to a corner or couch, he sits right next to me. Literally. Until I say he can go, he's stuck hip to hip with me. Time outs are too dangerous now.

To this day he still wanders but nothing like that day. I am lucky in that. Grateful even. He is now afraid of losing me (not sure why but I'm not going to argue the result). He now keeps me within eyesight. 

Locks have been installed (see previous post here) and continuous measures have been taken. I am constantly adjusting as he ages and gets bigger, more independent in ability and thinking. I honestly don't know what I will do when he's bigger than me and older. What will I do when I can no longer force him to hold my hand? I can't harness him. He won't fit into a stroller. I dread those days to come.

The fear remains. It's ever constant. I am hyper-vigilant. I have to be. I became the helicopter parent I never thought I'd have to be. The fear never leaves me. The store. School. Grandma's house. M's house. Aunt's house. It.Never.Leaves.

I will do what I need to in order to keep my precious baby safe.

Rest in peace Mikaela Lynch, Owen Black, Andrew Howell, and Freddie Williams. Angels taken from us far too soon.

Big Red Safety Box
Project Lifesaver
Autism Wandering and Elopement Initiative

Sometimes the most well intentioned things, aren't.

Sometimes we do things with the best intention in mind. We do what we feel is right for the time and situation. We study. We research. We ask. We think we have it all figured out.

Then we realize we don't.

If you've been following my page for the last couple of months you may see where this is going. The kiddo was diagnosed ADHD last summer. I had held of on doing it officially but decided that it was time so we could do something about it as it was affecting him at school. You can read about it here. The problem with Autism/ADHD is that it is EXTREMELY difficult to know what is the Autism and what is the ADHD. Extremely. Like, to the point of impossible and it's really just a guessing game.

Naturally, the doctor wanted to start him on a stimulant. This seemed to work at first but every couple of weeks it would seem to wear off and they'd up the dose. Eventually we got to a point where it couldn't continue. By the end of November his tic was so bad he couldn't speak, he was getting headaches, he was drawing incessantly (and crying over how he couldn't stop himself), and he stopped sleeping entirely for 2 weeks until he was pulled from that medicine. (It took that long because the doctor was consistently out of the office and the nurses were afraid to pull him off of it due to the nature of the drug. Ugh....)

They switched him to a non-stimulant. I won't go into detail but let's just say things got a lot worse and reached crisis levels. Every day wasn't all bad, just a lot of not so good stuff. My son was gone. He was saying and doing things that no parent ever wants to experience. His main complaint was that he didn't feel like himself. He was depressed. He was angry. He was irritable and uncooperative. The agency he gets services from was becoming increasingly concerned. We got in to a psychiatrist to take over management of his medications. We got approved for family based services.

Our first appointment with the psychiatrist was earlier this month. My first words? I HATE his medication, it made him WORSE. The recommended medication change was as I expected: Risperdal. It is very commonly subscribed to Autistics. But I had a very important question for the guy. The question is this: how do we know that his behaviors aren't a result of him being a high anxiety child? What if he's unfocused because he's busy worrying about his plush toys or if mommy will be home tonight? What if he's just appearing hyper because he is nervous and antsy over what may be happening later? What if his tantrums and meltdowns are solely because he is so worried about something that when he's prompted to do something it causes an abrupt stop in his thought train that he just can't cope and we don't know that is what is happening?

I wanted to STOP the GUESSING GAME!!!

He seriously just sat there and looked at me for a minute. Then he agreed with me. Then he suggested a much more conservative approach. We are trying a low dose anti-anxiety medication. 

It has been a little over 3 weeks since we quit his last ADHD medication. It has been 3 weeks since he started the anti-anxiety medication. While the new medication has not been around long enough to do anything significant yet it has been plenty long enough for the other stuff to get out of his system.

The results are amazing.

To put it simply, I have my kid back.

He's running. He's jumping. He's giggling. He's grinning. He's cracking jokes. He's the goofball we all know and have been missing all these months.

When asked how he feels.... He is saying HE IS HAPPY!

My intuition has been that we were missing the mark. It seems my intuition was right.

Migraines, trantrums, and "wth?"

When you suffer from migraines frequently like I do (the kind that never actually go away, leave you literally on the floor, eyes squeezed shut, completely down for the count and incapable of even making a squeak) you end up with a lot of time to think. Since you can't do anything else but lay there and you don't really want to dwell on the fact that your head will probably explode at any second, you try to occupy yourself. 

Today as I laid on the couch with two of my kitty pride purring away all cuddled up with me, while my totally awesome and thankfully pretty independent child kept as quiet as he was physically able, very mindful of Mommy's ailment, I had that opportunity. These are the kind of moments you have as a single mom where you have those "what if" and "holy crap" moments. While I have learned to function despite the pain, nausea, sensitivity, etc, that goes with migraines, enough to know that if something major happened I'd still be able to work our way through it, I still freak out a little over not being able to respond.

This thought path led me to think about how hard it is to be single mom with an Autistic child. I have pretty much spent the last (almost) 10 years raising this kiddo alone. I've been getting these knock down, drag, out, ha-ha you can't do sh*t today cause of me type migraines for over 15 years. Never did I think I would ever have to figure out how to manage the two. All I can say is, "Thank god my mom lives so close!!!!" Over the years it has become a less frightening thing for me as my son gains independence and knows what do to do if something happens. Granted he'd most likely call Grandma before 911, but I'll take it!

This then led me to think about how hard it is in the dating world to find someone who can honestly handle kiddos like mine.  Thankfully, I found such a guy in my fiance, M. He is actually a little upset that he is out of town right now and unable to be here during this current episode. All I can think is, "How lucky am I?" while I sit and smile to myself. In the past with guys I've dated, they've just avoided me like the plague. This guy wants to be here, knowing all he can do is curl up with me on the couch, make sure I'm ok, and take care of my son.

Holy golden jackpot, Batman!

This then led me to think backwards through our relationship and how M has been with my son. There was a very defining moment for me, early in our relationship, where I knew we'd be ok with M. We had been together for maybe just over a month.  I had to go to rehearsal and M said he'd watch the kiddo and everything would be ok. This stopped me dead, for two reasons really. One: I never leave him with anyone who doesn't know this kid inside and out, and two: I was sure that the relationship would be heading out the door in the days following... After all, at this point I was used to people running from our situation. After he assured me many times over and told me to get the hell out already, I went to rehearsal, frequently checked in, got reports that all was well. When I got home both were all smiles and they were watching Over the Hedge. I sent the kiddo to bed and everything seemed fine.

Then that defining moment happened.

When I came back downstairs I sat on the couch. M looked at me and said he had something to show me.  While I was gone the kiddo had misplaced a toy. At the time he was still very much of the mindset that if it wasn't where he thought it was then it was gone forever, stolen, missing, he'd never see it again. Well, apparently he lost something. M had recorded the ensuing tantrum partly so I could see what happened, but I think, mostly because he was actually quite amused by it. Why was he amused? Well... M is an extremely laid back kind of guy, very sharp contrast to me for sure. Not much ruffles him at all. My son can be overly dramatic and somewhat theatrical.  Picture a scenario like this:

A is laying on a stability ball, crying, screaming, yelling, just losing his mind, incapable of listening to reason.

A: It's gone! I'll never find it! Mom will be mad cause I lost it! (screaming continues)
M: Well, if you can stop crying long enough and tell me what it looks like then we can find it.
A: It's gone! I'll never see it again!
M: It's not gone, we can find it. Why don't you tell me what it looks like?
A: (screaming and sobbing) It's gone!!! I'll never get it back!!!! (more sobbing)
M: A, we can find it. I promise. If you can tell me what it looks like I can help you find it.

This goes on for about 5 minutes or so when...

A suddenly stops.... Looks at M.... And asks hopefully, "We can find it?? Really?"
M: (chuckling at how it suddenly and finally sunk in) Yes buddy, we can find it. What does it look like?
A: Let's look for it! Maybe we can find it!
M: (more chuckling)

The wayward toy was found within 5 minutes.

Throughout the exchange you could hear M give a little chuckle during the times when A got overly dramatic (which I will admit, those moments really are funny). What got me the most, was how calm M was the ENTIRE time and how he instinctively and simply talked A through the crisis. M just kept on talking to him, trying to talk him down and realize that the world was not ending.

That's exactly what I do with him. Well, bugger. And it just came to him naturally.

I never hesitated over the idea of leaving those two alone together from that day on. The two of them are like partners in crime hiding evidence of ice cream cones and comrades in arms when ganging up on Mommy. And let's face it, sometimes he's better at handling times of crisis than I am!

I snuggled down further into the couch pillows and kitty fur. Yeah, we'll be just fine. Are we lucky or what?

The First Week has Come and Gone....

Whew! The first week of school has come and gone and we survived. Both of us. We had a few homework battles but that is to be expected, right? It seems the Star Chart and earning the Mario plush toys has been a huge motivator for him and works wonderfully as a behavior modification plan. It has become one of my greatest ideas! Even his BSC is impressed. She even mentioned it in a meeting with her coworkers and supervisors! Whoo hoo!

Anyway, back off the side road... I've added a couple of things to his "required" items that are school related that I like quite a bit. Not only is homework one (being our biggest battle and I was forewarned he'd have math homework every night) but reading me a book is also one. On nights he doesn't have homework like Fridays and weekends? Well, he can read me another book. That makes two books and he can get his homework star! It's a great way for him to work on his reading fluency. (Can you tell I'm a teacher?)

This has actually worked out well. My fiance and I just love listening to him read. He'll do all the little voices of the characters and uses inflection! It's pretty impressive really. Not to mention how he does love to read. We have more books in this house then I have shelves to put them on! Every time the book fair comes to school this kid gets to go with a surprising amount of money and get several books. The teachers looked at me funny at first, but now they know! He'll spend every last dollar! He even helps the school aides set up the book swap and they'll let him choose a couple books in trade. He keeps bringing out books to read that I've never seen before!

What makes this chart even better right now? Since he has his own chores to do, like feed the cats and empty/fill the dishwasher and my favorite -clean up his toys, it leaves me a little more time to work on my classes for my Masters (Special Education for anyone who isn't aware). So far my house has remained relatively clean and therefore, my sanity is remaining somewhat intact. I HATE clutter. It messes with my mind. I also hate stepping on toys. Especially Legos. What makes those things hurt so much?

Anyways.... His ADHD meds haven't done a whole lot yet so his doctor doubled them. Hopefully we can see some change and we never get to "hell week." That week should be coming up soon. You know, the week where the novelty of new teachers and new classmates wears off and all hell breaks loose? I'm hoping that this year, it never happens.  Guess we'll see.

Another great thing? Sleep. Yep, I said it. He's SLEEPING! Since the melatonin dose was so high and not being effective his doc put him on a sleep aid and by golly.... It works! He's asleep within half an hour and out cold.... ALL NIGHT! Holy cow! No more 4 am eyeballs peeking over the edge of the mattress! HOORAY!!!!!!!!!!!!!  I've gotten comments about how much more rested he seems at school and how he's in a much better mood walking to his class in the morning than he was last year or any other year. Yes!  Since I drop him off in the morning before school starts now he is able to wake up on his own and start his own day before we go. This is a huge plus since it's his natural clock at work here! Dropping him off and picking him up at the end of the day also gives me the face to face time with his AS teacher and aides. They actually told me last week that since they see me every afternoon they weren't going to write in the communication log because it takes too much time and they'd just talk to me when I picked him up. Ok! We still write notes obviously if need be and can contact each other by cell phone.

So far 4th grade is shaping up to be a pretty good year for him. Here's to hoping it continues!

The time had come...

Several years ago I had taken my son to the Children's Hospital in Pittsburgh to get a second opinion/evaluation on his diagnosis.  It was a long tedious visit as my mother and I sat through many evaluations, filled out forms, and moved from waiting room to waiting room inbetween.  At the time I was offered medication for him to help combat some of his hyperactivity and because "many Autistics simply benefited from it." I ran.  The psychologist told me that if I ever wanted to consider the medication to let her know and bring him back.

The hell that was going to happen, right?

So here I sit, 4 years later.  He can't focus.  He's bouncing off the walls.  He has major impulse control issues.  He knows something is wrong and wants to be 'fixed'.  It's affecting his every day interactions and his ability to work at school.  Sigh.  The time had come.

So last May I called his pediatrician's office.  They sent me the forms I was already so familiar with.  I filled them out.  So did my mom, my fiance and his AS teachers at the school.  The end result was confirmation of what the psychologist told me 4 years prior, he has ADHD.

Last night I went and picked up the medication.  Let's just say 'mixed feelings' doesn't even begin to describe how I feel.  Four years ago I ran with the argument that he's 5, he's a boy, he need to run and play and be a normal kid.  Watching him over the last year has been extremely difficult.  I can no longer use that argument.  I can handle all the items that got broken.  The bumps, the bruises.  What I can't handle are the meltdowns and requests to be fixed.  The endless energy that sends him literally bouncing from one wall to the next.  Him crying over there being something wrong with him and needing a new brain.

He has been kept up to speed on what the doctor's visits were about and what the medication is for.  He has been anxious to start it.  He is aware that it is supposed to help calm him down and allow him to focus better.  When we got home last night and counted the pudding he wanted to take it right then.  (He can't, he has to take it in the morning before breakfast. Since he can't swallow pills we have capsules that I have to open up and put in something he'll eat.)  I then sat down to look at the information sheets.  Within the first couple words were "sudden death."  I near fainted...  Not what a mom wants to see, you know?  But I sat there and kept repeating that it only happens in people with heart problems and he had a normal EKG.  Something I am still repeating to myself today...

Needless to say this morning the first thing he thought of was the pudding.

It's been a couple hours since he has taken it and he is just fine.  I feel a little better.  But I can't help watching his every move.