Over these last few months, Christian has grown rather fond of certain movie/television characters. Fond, to the point, where somedays he wants to be called by the character’s name.

I was curious, as we headed back to school, if he would insist that teachers/students at school call him by the name of the character for that given day/hour/minute. Thankfully, he is willing to save these characters for home and/or during therapy time. I’m okay with that. šŸ˜‰

Anyway, his favorite characters to be (in order of appearance)…

  • Sawyer Nelson, from the movie ‘Dolphin Tale’ — Sawyer is SO gentle and caring in this movie

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  • Harry Potter — Christian is starting to be a ‘dead ringer’ for Harry now with his longer hair and an old pair of my glasses frames

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  • Murray Monster, from ‘Sesame Street’ — always sharing with us “The Word On The Street” and wishing us “peace” šŸ™‚

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Sometimes it’s not.

I don’t know how else to answer that question that I’ve been hearing so much of lately from Olivia. I understand her frustration, sadness, and/or embarrassment. My heart breaks for her, but it also breaks for Christian when he is struggling, and more often than not right now, it is torn in opposite directions.

How is it fair that we have to leave a party just as she is getting settled and starting to play with cousins who she rarely sees? How is it fair that we have to ask Christian to stay in a place where he is clearly overwhelmed and in a high state of ‘fight or flight’ mode? How is it fair that she cries all the way home? How is it fair that he cries all the way there?

How is it fair that she has to sit through Sunday School when Christian gets his lesson taught by mom in a separate room? How is it fair that sheĀ hasĀ to sit through church as Brian and I take turns watching a taped service in another room because her brother can’t be in church (for reasons unknown to us)? How is it fair that he is so clearly overwhelmed by things that he cannot express in words to help us understand how he is feeling and why he is acting the way that he is?

How is it fair that she has to watch Mom wrestle her half-dressed brother out of her friend’s house when he refuses to leave and we justĀ haveĀ to go? How is it fair that he gets to stay home when it is the day of her school play performance and she has to attend most of his functions?

How is it fair???

Sometimes it just isn’t.

It is a compromise. A give-and-take. A dance.

I pray that someday she (and he) will understand the decisions that we have had to make. That we want to make things as fair as possible, but sometimes it just isn’t possible to be ‘fair’ the way that is expected.

Back story would help here, but I haven’t had the opportunity to write it yet … so let’s just say that Christian has been strugglingĀ a little quite a bit at school this last month. We (his entire team) don’t know what happened to set this struggle into motion, but it’s there and has been incredibly hard for everyone involved, especially Christian.

As Christian’s Team adjourned from an ’emergency’ meeting at school a couple of weeks ago, the principal (Mr. G) just asked me what my plan was for Christian coming back after his Spring Break. You see, my daughter and I continue our Spring Breaks through the end of the week and Christian goes back today. Initially, I planned on driving Christian into school in the mornings. Why wouldn’t I?? I’m home and then Brian wouldn’t need to make an extra trip into town…

…ah, but his point exactly…

…we need to keep the ‘status quo.’ Christian needs the sameness of a regular school morning. So, Olivia and I will rush out of the house as normal right around 7 a.m. for the rest of the week and Brian will drive Christian to school, as usual. The words ‘No School!’ were removed from the calendar and Liv & I talk in secret about our day-time plans.

I pray that all of this helps Christian. I am at a loss, otherwise.

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Cast all your anxiety on him because he cares for you. [1 Peter 5:7]

I find it a bit embarrassing that I haven’t posted since October. In the least, life has been crazy – crazy good, crazy bad, and crazy everything in-between…

I find myself wanting to post today since it is World Autism Awareness Day (WAAD). There is so much to tell…

…sigh…

…I could tell you how this winter has been SO INCREDIBLY hard on Christian. And how he has started to loathe the snow. And how I can’t blame him as I am super sick of it, too, but, seriously, every time it has snowed (or even thought about snowing) since January, he has broken down into tears. And how he then insists on going outside and shoveling the snow to look for the grass. And how I know,Ā That’s SO cute! And how, it is. And that I’m so thankful that he has the words this year to tell us why he is so upset, but that being jumped on at 2 in the morning because it started snowing and we have to go ‘shovel the yard’ gets kind of tiring after awhile. ‘Good-bye Snow! Hello Grass!!!’ Please tell me that this will be a reality soon! #AutismAwareness

…I could tell you how about a month, no, maybe two months ago! we transitioned from the ‘child training room’ at church into the actual sanctuary! šŸ™‚ And how we were thrilled and excited beyond words! And we forced ourselves to somewhat contain our excitement for a couple of weeks not wanting to ‘get our hopes up’. And Christian was participating (more than he ever had before). Pixar was behaving. Olivia was so happy to be actually sitting ‘in church’. Everything was amazing! šŸ˜€ And then all of the sudden it wasn’t. And we were forced to carry him out while he kicked and screamed and cried about ‘Go Home NOW!!!’ And how we have tried for three services now to get there with him (dressed). And how that hasn’t worked. And how I’m praying that this weekend will be different. That everything will be fine again and that I’ll force myself to contain my excitement again so that I won’t ‘get my hopes up’. #AutismAwareness

…I could tell you aboutĀ my trip with Christian to the store this afternoon. And how we were just returning Olivia’s ‘Redbox’ movies and getting a donut (it’s Spring Break). Ā And then how the ‘sky started falling’ because movie display area is moved from where it isĀ ‘supposed’Ā to be. And how I tried to calm him and keep him safe, but that wasn’t working at all. And how I just wanted to curl up on the floor with him and scream & cry, but didn’t. And how we drew a crowd of onlookers. And how much I appreciated the two people who did stop to ask if they could help. And how I knew they really meant it and weren’t just pitying us, but I wasn’t actually sure what they could do to help. #AutismAwareness

…sigh…

…I have so much more that I could tell you — medication changes, bus issues, emergency school meetings, sibling issues, sleep issues, etc. — someday I hope to get these things chronicled here. Until then we will just continue in this crazy good, crazy bad, and crazy everything in-between life. And I will be praying for peace on this crazy journey. #AutismAwareness

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Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go. [Joshua 1:9]

I’ve been in training for a half-marathon. Here’s the post I shared on my running blog…

Challenge.

OK, so last time I wrote (before our computer was out of commission) I mentioned that we were looking into getting Christian onĀ a new med before the start of the school year.

It’s happening.

His morning AdderalĀ has been switched out to Vyvanse. They are in the same class of drug and are both long-lasting. Thankfully the Vyvanse comes in a powder-capsule form, so I can open it up and let it melt into the butter on the top of Christian’s morning toast. It has been working wonderfully so far. šŸ™‚ I am praying that the benefits will continue.

A nice side effect of the VyvanseĀ (as it was with the Adderal, too) is a decrease in appetite. That is a good thing since Christian’s other morning med (Risperidone) causes increased appetite/weight gain. The Vyvanse seems to be evening out the Risperidone in the appetite department. šŸ™‚ The frig is no longer being raided all day, every day.

This puts my mind at peace a bit as the school year is closing in on us quickly. Christian is very ready to go back. I’m happy for him! šŸ™‚

This post has been a long time in coming…

Back in April, after months of trying to find a specialist who would see us, Christian landed an appointment with a behavioral pediatrician. I held out high hopes for this appointment, especially sinceĀ the doctorĀ only agreed to meet with us after reading through the 60-some (double-sided) pages of reports that I had prepared and sent to her. I figured that she wouldn’t waste her time with us if she didn’t believe that she could offer us some assistance.

It was a long appointment. 2-hours. But it was good. I felt that Dr. C actually heard me without letting her mind jump six steps ahead and missing some of the key concerns/issues that we were having. And she had done her homework on Christian. She came in with a plan and had papers prepared to give to me explaining the benefits/side effects of each medication and why she was choosing them.

After leaving that appointment, I felt that we didn’t get to see all of those other doctors for a reason. We were meant to see Dr. C. This was the blessing amidst all of the frustration and disappointment.

So … you might be wondering what medication path we are now leading.

Before we had the appointment, Christian was taking risperidoneĀ in the morning and clonidine at night. To that Dr. C added AdderallĀ in the morning with the hopes that eventually we could switch the morning risperidoneĀ to abilify (to minimize the weight gain that Christian was having). (She also gave Christian an ADHD diagnosis.)

This seemed to working, but the AdderalĀ was wearing off in the early afternoon, so Dr. C added a low dose of methyphenidateĀ (Ridalin) to an afternoon snack. This was supposed to help him make it through his afternoon slump until dinnertime.

Everything was working fine and dandy until Christian caught on to my sneakiness near the end of June. You see, he is unwilling to just take medications. They have to be hidden in food or drink. He started figuring out that the sprinkles on that donut/ice cream sandwich/cinnamon roll/whipped cream/etc. were more than just sprinkles and refused to eat them. RE FUSE ED. My creative juices were depleted and I stopped trying to force the Adderal for the summer. However, school is just around the corner now, so Dr. C and I will have to come up with something – either a new medication or a creative way to deliver it.

The choice to medicate is not an easy one. Or a simple one. ItĀ is not for everyone, nor is every medication that is tried.

Right now, I feel like Christian has a good ally in Dr. C. She is on his side. Part of the team.