Monday, April 30, 2012

New Med Trial

I wanted to give you all a little update on son#2's latest issues at "camp".

Since the incident on the highway with son#2, Hubby and I have discussed what we think we need to see in son#2 before he comes home to us.
He has to be able to control those impulses to harm himself & others when he gets upset, doesn't get his way or gets uncomfortable.(Too hot, hungry or diaper issues.)
He's been on his "good med" since 2006. Unfortunately the main side effect is it causes him to be thinking of food continually. Which leads to weight issues. With him having lost so much weight at camp, we felt that was a good sign it was controllable.
However, the inability to control his other impulses when he doesn't get his way, isn't healthy for him or anyone else around him. And the "good med" doesn't seem to be able to curb all of those. So Hubby & I decided to talk to his therapist about trying something new to take the place of the "good med" while he is in a controlled environment like camp. In the past we've been able to see within one day if a pill/med would work or not for him. But this time the doctor didn't wean him off the "good med", she just jumped in cold turkey off one, and onto the "bad med" starting  little by little increasing it's dose.

 There has been no change in his behavior for the good. It's all been steps backwards and if anything has caused more damage in progress. He is taking his clothes off again, the holds were more frequent & for longer periods of time. And the first three days he barely slept at all.  I was ready to abandon ship last Sunday night when during a hold son#2 banged his head on the floor and split open his eyebrow area. Of course he wouldn't allow them to apply pressure to stop the bleeding. But once he calmed down & went to sleep, the nurses could see it didn't need stitches. That incident just set the tone of the entire week. It's been one phone call after another; every day bringing more phone calls & worse incidents involving his anger and aggression. One of the hardest weeks during his 8 months away for me. (That's right folks, it's been 8 months!)

We went to see him on this Saturday the 28th, and he was so happy to see us. He smiled, laughed and held tight to me. He walked us around the courtyard lap after lap, holding on to my hand or arm. And sometimes just smiling & jabbering up a storm. It was so great to see him happy. He even let us redirect him verbally when he veered off course or tried to duck into the cafeteria early. But because of his behavior that week he lost the privilege of going on a pass with us. As we left, the director stopped us for a brief chat. During that time, I guess son#2 got upset with us leaving after lunch & he was in another 20 min hold. Later that night they called to tell us he had shattered a window in his bedroom with his head. He was actually fine, but the window had to be repaired Sunday. We've had an average Fri/Sat/Sun of four phone calls a day/night.
This morning they called a little before 9am to tell me that he had been in a hold at 1am and again that morning after he woke up. BUT, the saving grace is this morning the doctor is taking him completely off of the "bad med" and putting him back on the "good med"!! Thank God!

What I believe has happened on this "bad med" is a placebo effect. It's as if he has had no medicine in his system at all. As the reserve of the "good med" has leeched out of his body, we're left with the behaviors we've seen when we've taken him off all meds once or twice in the past. Carson Raw. And it ain't pretty people. Autism can be an ugly beast when it's in the buff.

It's difficult as a mommy in those situations to be far away from your children. Especially when they can't speak for themselves. Part of the conversation we had with the director Saturday was about the continued bumps to the head in the same spot. Which in other kids with the same issues as son#2, has gone on to cause a seizure disorder. So it's important we get the aggression under control, especially since the obvious end result we want to see is him home with us. It's been a tough 10 days but I'm happy and so very relieved to think we're over this hill. I got another call this afternoon that son#2 was in a hold, but the "good med" should start building up in his system soon and hopefully with that will come less and less meltdowns. I thank God & hope that we are on our way down the other side of that hill. Prayers are welcome & appreciated.




Thursday, April 12, 2012

Happy Mother's Day...Early

I've wanted to write this post for a long time now. I've been sitting on it, mulling it over and trying to find just the write words to convey the picture I wanted to share.
Today seemed right because a very sweet family we know, is in San Diego today with their 5 yr old son, who is getting a pacemaker put in. Gavin is strong and his mama is even stronger.
Another child in our church got to come home from the hospital where he's been for months in Ohio. It was so sweet to see him with his whole family Easter Sunday. Gage is strong and Kris is even stronger.

When it was time for us to make the decision to let son#2 go away to "camp" and get help, everyone asked me how I could handle such a thing. All I know, is that God's good. Good enough to help me when I surely couldn't help myself.
When I went to the Bible to look for an example of my inner turmoil, I saw God's sacrifice of His son on the cross, I saw Job and his suffering of loosing his wife & children. Surely my own situation could not compare to the gravity of those specific examples. My child wasn't going to die, but it sure felt like I might. Then one day while talking to a family member, the realization hit me like a ton of bricks.
SARAH.

Have you ever noticed or thought about Genesis chapter 22 where God calls Abraham to sacrifice Isaac, how we don't hear one peep from Sarah, the mother? I feel relatively sure one of two things occurred in their little tent home that day. Either Abraham took Isaac with him and did not tell Sarah what God had asked him to do, OR Abraham and Sarah had some words.
I would think, that should the later be the case, there would be a few more chapters in Genesis if God felt that was helpful to us, but it's not in there. I double checked.

God asks the FATHER, to take Isaac and use him as a sacrifice. Kill him. And the next morning Abraham sets out with his son. So that means Abraham had to sleep on it. (And possibly talk to his wife about it.) Assuming he could sleep.
It took THREE days to reach the location to be used for sacrifice. That's a lot of thinking time. As most of us know, the story goes along that God stops Abraham from sacrificing his only son. Not ONCE is Sarah mentioned in the story or the 22nd chapter of Genesis.

What about this, what if Sarah knew what Abraham was doing? What God had asked him to do with Isaac. What if she had peace, faith and trust? That she just knew God would take care of her son. She was human. There had to still be tears and turmoil over all of that. Sarah waited SO long to have a baby--to give him up? Second guessing--"Did Abraham hear God right? He is getting older. They say the hearings the first thing to go..."

Mary the mother of Jesus had quite a job requirement--Mother to the Messiah, virgin mother, let him go to the temple and be with his Father, when I bet all she wanted was to hold him close and keep him with her. Fast forward, and she was at the foot of the cross, watching her son suffer a horrible death at the hands of others. Was this what God chose her for? To watch her child suffer? Why would God think she could do this?

Maybe He chose Mary & Sarah--and other countless strong moms like Elizabeth and Hannah and women I know today--because they had tremendous FAITH. He had a hard job that needed to be done, and he knew man usually likes to think they can do everything on their own, but these women, THESE WOMEN, would turn humbly to God. They'd seek him in prayer, thanksgiving, question AND doubt. And they would give Him, the glory and adoration.

Amazing! As a Christian we strive to be as Christ-like as we can. Far, far from perfect, we just don't make him proud some days. I cannot get over what a privilege and a blessing for a woman's faith to be picked to handle such extraordinary things! I'm humbled by Faith, Kris, Kim and countless other moms I watch and know. That God saw to it, that your spirit was so specially made for this difficult job. A job that sometimes makes you feel alone, angry, confused, worried and thrilled beyond any measure--usually all in one day. Being a mom is certainly not the most important job in the world, and it is not everyone's cup of tea. It doesn't make us better than any other woman and it doesn't make us less. But even God felt Christ would need a mother for his stay here on earth.


Monday, April 02, 2012

Weekend Visit

Well, our time with son#2 had many ups and downs. I don't regret it--I had my chickie in the nest for 23 hrs.
He was so happy to be going with us Friday. Unfortunately we could not find his seat belt lock, so he was a bit uncontainable in the backseat. But he smiled all the way home. Until about 15 minutes before our exit, when he proceeded to take off his wet diaper and disrobe entirely. Naked as a Jaybird as my mom would say.
Makes you wanna laugh I'm sure, thinking of us maneuvering through the traffic and backstreets of our town trying to keep people in SUV's and semi's from peering down into our mobile nudist colony. It was rather stressful though. And there was poo involved. Not too much, but even a little, is plenty.

My friend Joanie, who was at the house when the other two kids got off the bus, was very helpful in having a blanket ready to throw around son#2 and bring him inside. She had the shower going and wipes at the ready. I have loving and generous friends (Kim, Candice, & Elizabeth) who brought over tons of food for us for the weekend and were key in helping the weekend flow as smooth as it could. Thank you God I wasn't too proud to turn down their idea of meals to help out. Son#2 looooooves, I mean LOVES him some food, so this was an integral part of his enjoyment. And we had some pizza, salad ready for son#2 as soon as his shower was done. He was a happy camper until we tried to make him sit on the potty later & he ran me down the hallway just like a tackling dummy. Loosing 25lbs and 6 points on his BMI, just means he's a lean, mean, muscle machine.
The brothers enjoyed watching the movie "UP" with all of us and son#2 in our bed. He smiled, chattered and laughed all evening long. And we were so grateful he kept ALL his clothes on (except his socks/shoes) the whole weekend! And at bedtime he was a good little boy and stayed in bed laughing and chatting for an hour before falling asleep and sleeping in later than anyone else the next morning. A full nights sleep is never to be taken for granted at our house.

I had worked out I needed to go pick up some MORE shorts for son#2 to take back with him. He gone from XL shirts to M. And his shorts from XL to S! It's costing us an arm and a leg, but I sure can't complain--in fact I wish I had this problem myself! After rushing to two different Wal-Marts and labeling all the clothes, the other two boys went to spend the day (a much longer day than we originally thought) with our friend Melodie and her kiddos.
Son#2 did great on the ride back to camp. He watched some of his favorite videos of Veggie Tales and Elmo's World. And we had smartly packed a lunch of sandwiches & chips on the trip with some juice for him. He ate & was quite happy. Until we merged off of the turnpike onto I-35 heading south and we were 5 minutes from camp and a quarter of a mile from our exit. Our car felt like it hit a bump and we lost acceleration. Our car had power but we had to coast to the side of the interstate. And where we were, all that was available was a guardrail, not even a shoulder of the road. I immediately called for a tow truck, and then called Camelot to tell them we'd be late checking son#2 back in. I asked since we were 5 minutes away and it was about to get hot with no a/c, if they'd come get our son to keep him from being so uncomfortable. They refused, saying we had checked him out and needed to check him back in. I then called highway patrol for a trooper. I also called a cousin who lives in Norman thinking maybe he could come over & give me a ride with son#2 but he said it'd take him 40 mins but he'd head our way. Poor guy, I had to call him back (ever so slightly hysterical) and let him know the trooper was on his way. (Thanks for being a good sport Ryan & rolling with the punches--it'll make you a great dad.)

Son#2 was DONE. He had peed his diaper, he was hot and he immediately disrobed. Cars and semi's were coming so close there was no getting out of the car. This was gonna get ugly FAST. Son#2 had already started to scratch at Hubby who was sitting directly in front of him. When the trooper arrived he angled his car so we wouldn't get creamed getting out of our car & I filled him in on the situation. I asked him to please take son#2 and I down the road to camp--PRONTO. He suggested we forgo any other clothes and just try shorts. I agreed and squeezed out my side and hopped in the backseat to wrestle some clothes on our 11 year old nudist.
That didn't go so well. I stepped in gum, he kicked me into the guardrail or car door, I don't know which, but one of my butt cheeks feels like a donkey kicked me, so I landed somewhere pronounced. Then he went on the defense and started grabbing any flesh he could to pinch, scratch and fight. He grabbed my underarm flab and pinched a huge portion. And bit me on the same arm on the back of it just under my shoulder. He wasn't getting dressed without a fight and he HATES to be held down. All because he was hot. He almost pushed the trooper out into traffic and so he called for backup.

Unfortunately, that brought TEN state trooper cars, two OKC motorcycle cops, and a firetruck. Needless to say, one whole lane of traffic was blocked off on I-35 southbound. I was so worried they would hurt him & I had to keep making it known that he was 11 years old and couldn't talk! (People really never do take us seriously when we say how strong son#2 is.) They needed the TEN TROOPERS to take turns when one wore themselves out. After about 45 minutes they were able to literally hog-tie him with handcuffs on his hands and feet on his stomach in the back of a troopers car. They kept asking me if he'd been bitten by a dog, or if he was on any drugs. It was HORRIFIC to watch all this. There is no better word to describe it all. In the middle of all of this, the tow truck came for our car and their Lieutenant came in plain clothes to survey the situation and introduced himself.

I saw a news crew on the opposite side of the highway going slow & eventually making it's way across a huge grass median to us. I asked the troopers if they could please make them go away. I even told them it was fine with me if they used their guns. I saw the news crew leave and circle back around behind the long line of cop cars and then one of them got out & kept motioning me to come talk to him. I ignored him but after Hubby was done getting the car/tow truck taken care of, the reporter started on him. Poor Hubby, he thought it was a plain clothes policeman. In my husband's words, I FLEW over there after he had only 5 words out of his mouth. I yelled at him, "DON'T TALK TO HIM!" I stuck my finger in this 6'2 reporters chest & started screaming at the top of my lungs and he backed away & left. I remember saying something about did he have kids, this was none of his business, and if he knew what was good for him he better back it up. Hubby says I went from zero to 60. Mama Bear. I find it interesting the police never tried to help the guy.

After the ambulance came to bring a board to transport son#2 to the hospital, he had calmed down. The troopers mistakenly thought the ambulance could/would sedate him. They won't. I knew that from past experience. The ambulance then blocked off the other lane of the highway so our side was completely at a standstill. They got some information and then took son#2 to OU Children's ER. I called Camelot AGAIN, they again, refusing to come get him from there as well. I had by this point found a friend who would meet me at Camelot and Hubby could ride with the ambulance. Then I see another news crew that took up shop in the grassy median and started filming me getting into the trooper car. So if you saw me on the OKC news, I pray they blurred out my face.

Once son#2 got some water, and they uncuffed him at the hospital, he was fine. They still had him in the database from being there a few weeks before when he drank the rubbing alcohol. He ate two Popsicles, I showed up (A HUGE thank you to Hannah!!) with his clothes and off we went back to check him back into camp. Sweet as can be! I wasn't pleased with the treatment and unsympathetic answers I got from camp when I called.

And today I called and let Lolly the therapist know everything. She's gonna call me back later this week. I told her customer service was very unsatisfactory. I did not create the situation, and I thought they were there to be a support to son#2 and us. And to have them practically disavow any knowledge of us, was distressing and made the situation which was bad, ten times worse. I think she got my point.

A lovely, kind friend, who had already given her time the night before when we brought son#2 home, gave us more time & her gasoline, to come get us and bring Hubby & I back home Saturday night. What a very long, no good, very bad terrible day. But because God is good, it was saved from being a total loss. We had great, wonderful friends rescuing us, listening to me hysterically rant & rave and keeping the rest of our clan safe & none the wiser. Funny enough, the evening before on our drive home with son#2, we had discussed if we won the mega million lottery, what all we'd do with the money and who all we'd help in the name of God and Autism. God has such a sense of humor because we ended up not winning (I know you're shocked.) so instead of helping others, we humbly had to take, help from others. Many others. As my friend says, "It takes a village."

Hubby & I have a our battle scars. His neck looks like some cool, red tattoo of Chinese symbols. And my arms, well both sons #1/#3 keep asking if I got tattoos. Ironically, Doctor M at camp, had mentioned Friday, because son#2 didn't seem to show any progress at potty training, that maybe her work was at an end with him. Heads up lady, you can ride in the backseat the next two hour trip we take and see if maybe you find some issues you think you might be able to work on with him. Sound fair?