Keep Calm and Carry On

Well, it's been since AUGUST that I posted.  That seems like a long time ago.  I have had some very kind souls email me asking if everything is OK.  The short answer is yes.  I guess I just needed a break, and I was working more hours than ever before (with children), causing me to reprioritize (is that a word?) a bit. 

It isn't too surprising to know that a lot has gone on since August.  Anyone with children, not yet children on the spectrum will know that every day is an adventure, not yet 4 months.  So going back a bit, the summer was a little rough for Daniel.  His puberty was in full swing and (we believe) this, on top of his autism was/is causing him to self injure and occasionally, coming at myself and/or my husband.  It seemed to gradually increase throughout the summer.  Many have asked, "was it also due to the unscheduled summertime?"  Possibly.  That used to be a huge problem, but at some point he always adjusted and settled in to a summer routine of parks, pools and lakes.  This summer, he escalated.  In about August, I'd had enough.  Actually, my last post about our amazing experience with a successful tooth pulling. made me start looking at some of our choices a little closer.  I am referring to the fact that Daniel has never been on any sort of medication for anxiety. 

Medication is not my favorite thing, personally.  If there is a laundry list of side effects that will come from whatever it is, I will be that person in the .05% who will experience it.  It's just the way it is.  So I try my hardest to avoid it.  It's not always possible and I am not against it.  I do not judge those who choose the path of medication.  I think everyone should do what's best for them.  I just like to try everything else, first.  In our society where people want a magic pill for everything, I admittedly may have gone too far in the other direction.  I am slow, but eventually I'll see the light.  I believe what changed my mind was that one Valium Daniel took to go to his dental appointment.  He was so relaxed. It made me see how HARD it is for him.  Every day.  I know that, of course.  But after that I couldn't shake the feeling that I am making his life much more difficult by not looking into something to "take the edge off" and that it is possible for him to not be completely drugged out (my fear) and to just feel a bit less anxious every moment of his life. 

The other thing that happened was his social skills teacher,who he'd seen for years, came to me and said some parents of other kids in his group have said to her that their kids were becoming afraid of Daniel because he was escalating so much in group.  He never touched anyone, but his intensity was SO great, and sometimes he'd hit himself or the table etc.  Now, I would like to argue that in JUNE I TOLD her this was an inappropriate group for him.  The kids were too little.  I thought that was upsetting him.  He is used to being with kids his own age.  She had him with this group because of his language deficits.  I understand that.  But it wasn't working any longer.  I knew that and had talked to her about it.  Several times.  She asked for another chance to make it work.  Then came to me saying parents were calling her etc.  I didn't think it was very fair.  I told her I was going to start exploring some new avenues with Dr's and would get back to her when we had it worked out.  Well, it's pretty much worked out, but I'm not getting back with her yet.  Frankly, I'm sort of pissed that she didn't listen to me and things escalated to where they did. And I'm mad at myself for listening to her when I knew she was wrong.  So that is in a holding pattern.  I think he was due for a break anyway and the money saved hasn't made me upset either.....

So we went to our pediatrician and talked about Daniel hitting himself in the head or banging it.  Biting his hands HARD, and charging at us.  The fact that he is now 5'10" 198, (that is today, not in August, but you get the point) wasn't helping.  Zachary was scared of him.  It wasn't pretty.  Fast forward to being sent to a psychiatrist, I'll call Dr Q. We did the assessments, answered endless questions and filled out even longer questionnaires.  You know the drill.  I'll skip the details.  We decided to start mild.  He started with 5 mgs of Buspar once a day, at night.   About 4 weeks later we added 5 more mgs in the am and a few weeks ago added 5 more in mid afternoon.  As Daniel says "my pills make me less anxious".  And they do.  It is a pretty mild medication and it seems to be helping, A LOT.  I am happy to see that he is feeling more relaxed.  Some of his compulsiveness has eased up.  He is doing much better.  Oddly enough, none of this self injury had transferred to school.  He would work SO hard he would save it up for me.  A few things happened at school that he couldn't handle and it wasn't until he was alone with me that he came totally unglued.  For that I am thankful.  It doesn't always feel like a great thing when you are the person who it's being saved for, but it's nice to know you are the safety zone. 

Now we have been instructed by the psychiatrist to write down when he hits himself or bites (which has become his preferred thing).  My mother in law gave me a notebook in my stocking.   This is it. 

As my own little joke to myself, this is what I'm using to write down the self injury log.  It isn't a bad reminder, as you are writing down what led to your child beating his head with his fist, to take a deep breath, and carry on. 

So here we are.  I always knew this time would come.  Medication.  I also knew it would probably be during puberty.  He turned 14 this fall.  He is the same height as I am.  He is growing up.  I think this is one of the best decisions we have ever made.  I think I waited too long, but that is par for the course with me.  I can just be thankful that we took the steps we needed to for our family, and most of all, to help Daniel feel better about himself.  It's a new year.  Follow your gut and do what needs to be done. I'm glad to be back in blog land.  Keep Calm and Carry On!

There's a Frog in my Throat!

Daniel has finished off his antibiotics. Number 20 was crossed off the list, much to Daniel's joy. Somehow we ended up a bit short on medicine. My husband suggested we just give him the rest of it at #19. Ahem. NO! I suggested that Daniel must cross off 20 otherwise he would never feel he completed his goal, and we should divide what's left, in half! Then he would have completed all of the medicine and had 20 doses. Todd agreed. I'm glad I was around and Todd didn't just give it all to him at number 19. That would have been a disaster. And TODD would have been in charge of calling the Dr's office and explaining why we needed 3 extra tsps of Amoxicillan!

I have to admit, I totally get why Daniel likes to cross those numbers off the chart. There is something very satisfying about crossing something off of a list. ESPECIALLY if it's something you didn't really want to do! Right? So I totally get him wanting to see it and cross it off. I've had many people say it would help them too because they lose track while taking medications. Do you think I could market my chart of 1 - 20? HA! Sometimes the simplest things go a long way and while it seems that it should be unnecessary to have a chart. It makes it so much easier for Daniel. I used to fight things like that because it just didn't seem like we should have to do that every time. Now when I look back I wonder why I was so opposed to making my life easier?

As the antibiotics were being finished I noticed that Daniel was beginning to lose his voice. When I asked him if his throat hurt, he glared and me then said NO! I, personally, think he is lying, but I can't prove it. So I'm pretending that he's telling the truth until I have further evidence. If you are wondering why he'd lie about such a thing see this post. Some of you with autistic children might be saying "but our kids can't lie". BALONEY! Daniel does all the time. Well not all the time, but he is certainly capable of it. Especially if he thinks he may miss school. He also lies at the end of every day that he was really really angry. We do a feeling journal for his group speech on Monday's and he is supposed to record his feelings of anger. You have to be on top of him because he will always say "I wasn't angry" and I'll say, "Daniel???" This happened last night then he changed and started his sentence with, "I was annoyed when. . . " I have to hand it to him. He's funny.

This time around when I'm asking him "does your throat hurt?" Daniel is responding with "no, I have a FROG in my throat." Which, if he could wink, he'd be winking at me and nudging me with his elbow in a "get it?" sort of way. He can barely say that phrase with out laughing out loud. That is one of the things about our language that is so very difficult for kids on the autistic spectrum. He used to get angry (ok annoyed, he'd say) and demand that he does not have a frog in his throat. For years he probably was worried, without me knowing, that maybe his throat hurt because there was an ACTUAL frog in it? Hmmm. No wonder he never wants to be sick? We have gone over this enough now that he thinks it's hilarious that someone would say something so ridiculous. Now he uses it whenever possible. So for several days it's been "hey mom, my voice is froggy, wink wink". Books like these have been helpful to get him to understand. In kindergarten he got a hold of his first book of idioms. The book More Parts and it was very upsetting for him. For someone who is completely literal it is a nightmare read. But after going through it with him many many times, he has learned that these are just silly sayings. "You crack me up", is another favorite. Which is dealt with in this book. For years whenever I'd say that he'd go into a panic and scream "YOU'RE NOT CRACKING UP!" It's funny now, but not at the time.

One of my other favorite stories is when it was summer time he would run out the door into the backyard with no shoes on. I'm always afraid he'll step on a bee and get stung so I'd yell “you can’t go outside with bare feet, you could get hurt.” He would completely ignore me. I would yell again, and as such it would go back and forth. Yell, ignore, yell, ignore. Then I'd yell, "come put on your shoes!" He would come in and put on his shoes and go back out. Then one magical day he came in and looked down at his feet and said with a very strange look on his face, "I have bear feet?" A light bulb went on in my head. I finally realized he thought I'd been yelling out the door for YEARS that he has feet like a BEAR, instead of BARE feet. No wonder he was ignoring me? He probably thought I was a crazy woman! It wasn't until I said what I wanted him to do. "Come in and put on shoes" that he would do it. Besides the hilariousness of him thinking I'm telling him he has feet like a bear, the point of this story is to be direct when dealing with kids with autism. You can make a simple chart and cross things off as you go, you can get to the point and say to put on shoes, not give a long explanation of why. If only I would have known, "I might not have lost my mind!" There's another one!

Super Nanny would NOT be proud

Last week I was noticing that this cold of Daniel's was coming back for round 3. He spent almost all winter healthy then sometime in February he started getting colds. It seems that February is always a bad month for him, health wise. I can remember this only because he never seems to make it to the Valentine's party. . . .

I had noticed his eye was a bit red on Tuesday or Wednesday, but he said it felt fine so I hopefully ignored it. Thursday morning I came back home from Zachary's bus stop to Daniel saying, "my eye is red and it feels funny". DAMN! I, very cautiously, told him he was staying home from school. You would have thought I said, "Daniel I am now going to cut your right arm off, prepare yourself". As I knew he would be, he was furious with me. He HATES to miss school for many many reasons. First, he just likes to go. He likes the kids, he likes his days. PPI years I had to force him on the bus, but pretty much ever since then, he'd much rather go to school. Second, I am breaking his routine. This is what really pisses him off. So I knew when I made the call, he'd be upset with me. These days he usually gets over it in about 15 minutes. That would not be the case today. He was mad and I was the focus of that anger.

I, unfortunately, gave him a glimmer of hope about school. I had told him that if we could get him into the Dr. early, maybe he could still go, depending what he said about his eye. But if pink eye was developing I really wanted the meds to head it off. . . Well I SHOULD have just said you aren't going then if that changed he'd be thrilled. But no, I had to be honest, and hopeful. What a mistake. So for 45 minutes he was mad at me. Then I got through to the Dr's office. The appointment wasn't going to be until 3:00. UGH. That is partially because I made the decision to wait for the marvelous Dr. Israel (cue the angelic music!) The most wonderful, understanding, thoughtful pediatrician ever. He was the one who first said the word autism to us and sent us on this journey. When I hung up I said, "Daniel, your appointment isn't until 3:00 so we are just going to hang out today and take it easy." So then we started ALL OVER AGAIN, with the fit. I don't think I've seen him so angry, in a controlled sort of manner. It was very strange. Did I mention he was MAD!?

He was demanding to go to school and pacing around then went around the corner from the family room where I was sitting and yelled, "you are a STUPID mom." Which is probably the worst word he could come up with! He doesn't know any cuss words. I'm sure of that, because I think I'd have heard it. Especially that day! Frankly, it was hard for me not to laugh at him. I don't know why, but the whole thing struck me funny. Then he marched into the kitchen and started putting on his socks. I said, "Daniel what are you doing?" (he never puts on socks unless he is leaving). He said, "I AM GOING TO SCHOOL". Um, "no you're not". Scream scream scream.

It went on and on and on. On his own he started trying to take deep breaths. One of the calming strategies they talk about in Miss Mary's group. It wasn't working. But he started to do it ON HIS OWN. Progress! The other one is singing. Daniel LOVES singing. Does it all the time. So we started to sing his calming songs. One of them is "Celebration" by Kool and the Gang. Now if you think that's funny, go ahead and try to sing that song and not get happy!! (Every one around the world, c'mon! )

The singing finally calmed him down and he settled in for a good day of computer, movies and music. We went to the Dr. and after his 3 weeks of cold and red eye, Dr. Marvelous put him on an antibiotic. Part of the reason I've gone through all of this is because of medicine. We got the amoxicillan. He still can't take a pill. We really haven't tried. But our wonderful Dr. asked DANIEL if he preferred the chew up bubble gum flavored pills or the liquid stuff. He asked Daniel himself instead of talking through me, which is one of my favorite indicators on how a person takes Daniel as a person. Daniel chose the liquid. It took years to get him to drink that liquid.

I can't even count the times that the medicine ended up puked up into the toilet or spit all over me or my husband. He couldn't keep it down. He gagged, he threw up. We tried to hide it in juice only for him to not even take a sip, because he could smell it in there. We'd end up getting double prescriptions to account for this drama and still never be sure how much he actually consumed. Just knowing this was all coming would make me crazy. It was exhausting for everyone and endless.

I wish I could remember his age, but it was at this house so I would guess 2nd grade. He was becoming more aware of things and I felt I could deal with him a bit. Then I pulled out the strategy that would make Supernanny cringe. It is not under parenting 101 that is for sure. But I knew if there was one thing he hated more than taking medicine, it was a shot. The word shot instills such a fear into him it is unbelievable. So one night at 3:00 am when I'm exhausted and just want to crawl in bed, cover my head and never have anyone talk to me again, he spit the medicine all over me, yet again. I went in my room and started to put on clothes.

He said, "what are you doing?" Ok, he screamed it.

I replied, "put on your clothes, we are going to the hospital to get a shot. If you won't drink the medicine that is the only way we can get it into you."

"NOOOOOOOOOOOOOOOOOOOOOOOOOOOO, I'll drink it, I'll drink it."

And he did. And we never had a problem with it again. Ever. I know that was awful. Not my proudest moment. But sometimes when you are exhausted and can't take it anymore you make poor choices. I'm ok with it. After that he has taken his medicine without incident. He chose the lesser of two evils and has been fine with it ever since. Possibly scared I'll give him a shot, but fine with it. I certainly would not be nominated for parent of the year, but it worked. And I WOULD have taken him to the hospital, I was DONE, and he knew it.

He doesn't love to take medicine, but since he does take it, we make up a basic chart. See here.

He crosses it off after each dose and it gives him some power and control and he knows how many are left. It's a very basic visual that is extremely helpful to him. I used to do it backwards, 20 to 1. He'd cross it off and say "18 left" or whatever. This time I went 1 to 20, so now he has to figure out how many are left. He can cross off 4 and then figure out 16 left. We might as well throw a little math in there too!