While I am super excited and thankful for my new job, I feel a bit like I’m in mourning for parts of my “old” routine. The things that I will no longer be able to be a part. Things that I will miss deeply. Things that I took for granted before.

To be able to pass through this transitional stage of my life, I thought that I’d compile a list of things that are changing — not for the good, nor the bad, but just the things that are…

  • I will no longer be able to put Christian on the bus in the morning. It is hard for me to hand off this responsibility, even if it is to Brian. I remember going through some great joys and fears and tears and laughs throughout this process over the years. I will miss it.
  • I cannot volunteer at Olivia’s school this year. I loved every minute of being there last year – the staff and students are wonderful. The fun of being the volunteer – “Mrs. [Mama] is here!” and the smiles and the hugs and the sighs and … the everything. I will miss it.
  • I can no longer “sleep in.” I will miss this, even if it was an unpredictable perk.
  • I cannot just stop by Christian’s school to drop off this or that, to drive him in on a hard day, to pick him up if necessary… I will miss that.
  • I won’t be home in the middle of the day to get the mail. I’ll miss that, too.
  • My Tuesday morning BodyPump class definitely won’t be happening. I knew a former therapist and family friends in that class. It is such an awesome and amazing workout. I always left class feeling empowered. I will miss that Tuesday morning workout.
  • I will not be able to just chill in the office at Liv’s school waiting for my “entrance” time. I will miss that down time and the weekly coffee chats with a fav principal.
  • I will not be able to do all doctors appointments with the kids anymore. That has been very hard for me. (The first one that I missed was yesterday.) While I know that Brian is perfectly able to take care of these things, this has been my responsibility the last 8 years. The well-checks, the specialists, the therapists, the sick visits, the dentist, the evaluations, the diagnoses, the everything … I know this stuff backward, forward, in my sleep and it feels so strange to hand this off. I will miss this tremendously.
  • I still miss not being able to help coach sports, especially soccer. It’s been over ten years since I’ve assisted in this area, but I still miss it. Perhaps it was the excellent head coach that I worked with. The one who started every practice/game, whatever the weather/mood/time of day, with – “It’s a beautiful day for soccer!” And it always was. I find myself watching teams practicing and wishing that there was a way to be involved. Someday, I hope that there will be. Until then, I will miss it.

I’m sure there are many more things that I will be missing this year with this transition in my life, but I feel blessed by the opportunity to start this new adventure. I am looking forward to seeing where it leads me.

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Yesterday, it almost passed without being noticed. It’s honestly amazing that I almost made it through an entire January 19th without thinking about the day that changed my life’s perspective. Yesterday is our “A-Day” anniversary. A-Day = autism diagnosis day. It has been six years. I still can’t believe that S.I.X. years have already flown by. Oh, and how my perspective has changed with time and experience.

I have reflected on our A-Day in the past. (Click here to review our 4 year anniversary and here to review our 5 year.) This year, I think that I’ll recount some things that I’ve learned along the way.

  1. In the world of autism parents, there are two real and very distinct polarizing views. Those who believe that there is a “cure” for autism and those that think that the “cure autism” parents have fallen into the trance of a cult. I am neither.
  2. We have tried biomedical intervention and have seen some improvements, but not enough to continue to pursue those ideas.
  3. I did really hope (at the beginning) that Christian would be “cured” because his autism was the regressive type. I no longer want or need that for Christian.
  4. Just because we no longer are looking for a “cure” doesn’t mean that we don’t want what is best for our son. We still spend countless hours with therapy and reading, researching, and trying new ideas.
  5. Some of these ideas work wonders. Some don’t work at all. Some make things worse. Some make life a little bit easier. Some only last awhile. Some forever change our lives. We never know before we start which of these scenarios we will face.
  6. A gluten and casein-free diet was a godsend for Christian for over 5-1/2 years. This summer we slowly started re-introducing these banned foods. Christian can tolerate most now. We are thankful that he is starting to take an interest in what we, as the rest of the family, are eating. He is now trying new foods without behavioral consequence. I am overwhelmedly relieved.
  7. Some times you do need to use medication that you really wish you didn’t have to give your seven-year-old. Finding the right one at the right dosage can really turn a downward spiral into an upward one.
  8. Dogs are amazing. Watching Christian learn to be a friend warms my heart. I love the smile on his face the moment that he sees his Pixar. It is priceless.
  9. Technology is fantastic. It has given my formerly non-verbal son the gift of a voice before he had the verbal words to use. I am forever grateful. It is a window into the inner workings of his mind.
  10. The love that others (therapists, teachers, bus drivers, neighbors, friends, volunteers, strangers, etc.) show my son will always make me teary-eyed. I will cry later when I think back on it when no one else is around.
  11. Olivia is a great little (big) sister.
  12. I can be a “Mama Bear” if I have to be. Watch out.
  13. I do need to take care of my health. It is just as important as everyone else’s.
  14. Sleep is precious. Yes, the name of this blog is still applicable. 😉
  15. The one and only thing that has held our family together over the last 6 years has been God. He has been our glue when we would have fallen apart physically, mentally, spiritually, emotionally, etc. Every time I look at our two beautiful children the promise of Jeremiah 29:11 echos in my mind – “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Medicating our children is something that my husband and I take with the greatest caution. Especially when we are looking at a medication that Christian or Olivia would be on long-term. We have only medicated after lengthily discussion and research.

Last November, we made the difficult decision to start Christian on Catapres, hoping to help him with attention and focus at school. We had some luck it. At least, at first. We tweaked the dosage and form of delivery, but the meds were making him unpredictably moody. We lost him to inconsolable bouts of tears that would last for a half-hour and the only thing we could do to help Christian was to quietly hold him while he cried it out. However, at a lower dose in the evenings, the Catapres was proving helpful as a fall-asleep aide. That still holds true. Every evening at dinner, I slip him his Catapres and he is willing to go to bed by 9pm. (On nights when he hasn’t received the meds, he is still (literally) bouncing off the walls at midnight.) This medication has become an important part of our daily routine.

We were asked to reconsider medication to help Christian with focus and attention at school again this year. This school year has been a great struggle for him, his teachers, and his assistants. We were cautious, especially knowing how many changes we were dealing with at the start of this school year, but each day that passed his reports coming home would sting my heart. Christian could not focus or attend to much of anything. He would hit and kick and spit. He was eloping (running away) from classrooms and the playground. He was having issues that we hadn’t heard about for two years. It was time to help him. To re-research medications that could possibly help him have positive days at school.

I was scared and Brian was hesitant, but since we are both former elementary school teachers, we tried to remind ourselves how tremendously important it was for our ADHD students to have their medications before they started school each day. Without their meds, the day was nearly impossible. Was this same thing true for Christian? By not medicating him, were we missing an important part of assisting him???

So, we prayed and researched and talked to other ASD parents. We came to the conclusion that we would try a new med with Christian. We knew which one we wanted to try. I emailed our doctor (so that she had the time to research the medication) and set up an appointment for the following week.

When Christian and I visited Dr. S, she was totally onboard. We chose the med, Risperidone, in liquid form. We would start Christian at a very low dose and slowly work our way up the dosing ladder. Christian only takes the Risperidone in the morning and continues to take the Catapres with his supper every evening. We also added a nasal spray (once in the morning and once at night) for the seasonal allergies that we thought he had been dealing with along with the new pet allergies that he seemed to be suffering from.

Our verdict — the nasal spray seems to be reducing congestion and also Christian’s need for constant head pressure. He was always seeking out things to forcibly push his forehead/nose onto or seeking out the adults around him to squeeze the sides of his head, bridge of his nose, forehead, etc. This is happening less and less. Wonderful! However, there is a weird side effect that we have noticed with Christian and this medication — lack of sleep when he has an evening dose. Yeah. With the evening dose, he is up for the day by 2am. This mama is too tired to do that daily or every other day. We have just figured out this strange connection and will no longer be giving the evening dose.

As for the Risperidone — it took a few days to figure out the best delivery. In the coveted root beer. Straight into the mouth. Sprayed onto his morning toast. Since the dose is SO small and I know it will not be left behind, I have decided on the last one. It’s working. (For now.) We started Christian at a super low dose and stayed on that for 5 days. It didn’t seem to be having much effect, so I bumped it up to the next dosage that our doctor thought that we should try. One day later, we had an AWESOME report come home about Christian’s day. The next day was great, too. And then yesterday was fantastic. (You can read about it here.) Today was divine. We are excited about the way this med has started. We pray that it will continue to be a benefit in Christian’s school life!

 

[sigh]  This week is the start of a major change in routine…

We are back from vacation — leaving Olivia bored (since she had so many people to talk to and play with for the last week) and Christian wanting to swim and go for boat rides.  This is the closest that I can offer —

Summer school is over.  Christian has been requesting “school” for the last couple of days and waiting for the bus to show up.  I love that he loves school that much.  🙂 I’m bummed that it doesn’t start again until September.  😦

Therapy schedules have shifted, which is actually good because some of them moved into the morning to make up for time that he was at school, but the shift still throws everyone off a bit.  (And Christian’s having a hard time adjusting to Olivia interferring helping with therapy.

And we are having a family reunion at our house this Sunday.  Awesome that it will be here and we will be in a Christian-proofed 😉 environment.  Just not looking forward to all of the cleaning that lays ahead.  It probably won’t be so bad once I get started.  That “getting started” is the hard part for me.  However, it will be helpful to have Olivia staying with my parents from Friday afternoon ’til Sunday at party time to play with her Arizona cousin.  I found out that she is my big mess maker.  If I can start cleaning after she goes on Friday, it should stay relatively clean until Sunday.  Whew…

Sigh.  Where to start?!?  It’s been awhile since I sat down to write and ponder what’s been going on in our lives, so, I guess, this post will be a bit of a hodgepodge as these last couple of weeks have just rushed on by…

Well, last week was Christian’s spring break.  It was a struggle.  From a former-teacher’s standpoint, I understand the NEED for a spring break.  From Christian’s standpoint, I wish there was NEVER a break from school.  Our routine get SO messed up that it’s hard to get anything done.  It’s hard for Christian to stay dressed.  It’s hard to keep the peace between siblings.  It’s hard to keep my patience and sanity.  It’s hard to find something to do that pleases both kids.  It’s hard to keep up with the toileting issues that always rear their ugly heads anytime a major routine change happens, such as a LONG break from school.  Sigh.  We did manage to move a few of Christian’s therapy shifts earlier to help eat up some of the length of his days.  The kids and I went to visit my parents 45-minutes away and made animals at Build-A-Bear Workshop for their early birthday gifts from Grandma and Grandpa.  Christian was a little overwhelmed with all of the choices at the store, so I started making executive decisions for him, which turned out fine in the end.  (Especially when we got home and I realized that he wasn’t playing with his animal because I had put jammies on it.  Come on, Mama, animals don’t wear jammies!  I took them off the dog and then Christian LOVED his puppy!! 🙂 )  Liv got really shy there.  She refused to interact with the ladies in the store, but she knew what she wanted and found a Hello Kitty and dressed it in Hello Kitty jammies.  Yeah, she LOVED it!  🙂  Liv then stayed at Grandma & Grandpa’s overnight.  Her first night EVER away from us.  She did great!  She did so well in fact that she didn’t want to come home the next day.  😉  Who can blame her???  She had TWO WHOLE people’s undivided attention!  She certainly doesn’t get that around here.  Liv is looking forward to the next time that she gets to do that!  🙂  Oh, and the weather last week was BEAUTIFUL!  I couldn’t have ordered better weather.  It was warm.  It was sunny.  We were able to spend time outside.  🙂  (I just had to keep an eye on my little nudist.  He’d run out there with his clothes on and a minute later he’d be running laps in the yard TOTALLY in the buff, losing his clothes somewhere under the slide all while the neighbors were outside eating their supper.  Sigh.)  Christian started refusing to use his words towards the end of the week making it extremely hard to communicate effectively.  One of Brian’s grandmas broke her leg and ended up needing surgery.  (It went OK.  She is still recovering at the hospital.)  We had an Easter egg hunt with the kids in our living room on Saturday (since we were going to be gone most of the day on Sunday).  They had a blast.  Then we celebrated Liv’s Golden Easter Birthday here on Saturday, too.  She was excited!  🙂  Gifts, pizza, some soda, cake, playing with Neighbor Girl…Liv was a happy girl.  On Sunday, we rushed out the door after Brian was done milking to get to church.  We got there a few minutes late and didn’t get to sit in our usual spot.  Sigh.  Christian did OK, but struggled after 20 minutes.  And as pretty as Easter lilies are, they make me nauseated and headachy as I am very allergic to them.  We ended up leaving the service as communion started as wrestling Christian was getting harder and he was starting to “wet-noodle.”  We wanted to get out before he started his angry screams with hitting.  So, back on the road to my parents for the day.  I brought C’s jammies as I figured was better to have him wearing the jammies than streaking around all day in his underwear (or less).  I was happy that I thought of that before we left the house.  Liv enjoyed playing with her cousins, and celebrating Easter, and being the “Birthday Princess Flower Girl” for the day.  I enjoyed seeing my family and chatting a bit.  And it was nice to have some extra help in the backyard when everyone went out.  I stood on one end of the yard while the other end was guarded by other family members.  Thank you!  We only lost C once when he stealthily snuck through the house without making a sound.  Thankfully I found him hiding in the back of one of the cars in the garage inside of running down the street!  😉  After awhile, C wanted to snuggle with me in the dark, quiet basement, so I obliged.  We fell asleep just before supper, so when Brian woke me we decided to just let Christian sleep since he was tired enough to be napping and couldn’t eat anything that the rest of us were having for supper anyway.  Well, perhaps that was a mistake on my part.  I woke him a 1/2-hour later and then couldn’t get him to settle down once we got back home.  One day I’ll learn my lesson.  😉  I was a little nervous on Monday morning about getting back INTO our routine.  C wrestled me a bit getting into his clothes, but as soon as we pulled into the parking lot at school, he giggled.  He smiled.  He did his happy dance and then ran and galloped while “happy singing” all the way up to the school doors!  Amazing!  He was SO happy to be back!  🙂  (And I couldn’t have been happier for him, either.)  Therapy went well on Monday afternoon.  All back to routine!  🙂  Liv spent most of the day playing-up her Diva attitude while I attempted to pick-up the house and run errands.  Then she and Neighbor Girl played a LOT, which is wonderful, but they were also fighting and Neighbor Girl asks a LOT of questions.  More than Olivia does.  I didn’t know that was humanly possible.  And C went back to having accidents in the basement after his therapist left.  I was a bit frazzled.  (OK, that’s an understatment.)  I was ready to have everyone turn in for the night, so I could have some quiet solitude.  I basked in it before bed.  It was lovely. 🙂  Unfortunately, 1:30 rolled around with a wetting accident in one room, so I immediately started laundry.  2:30 started vomiting in the other, which continued for the next few hours.  5:30 came with a cry about the couch being peed on and then the vomiting started again.  Then I started not to feel so well.  Some of that just stemmed from major sleep-deprivation and having dealt with the middle of the night pukes.  I happily accepted Brian’s offer of taking Olivia to the store with him while he was home over his break.  Yes, I would rest with Christian.  And we did.  For 15 minutes.  Then I heard THAT sound.  Then I was covered in THAT stuff.  Eww…that didn’t help me feel any better.  😦  Poor C.  As I was getting myself out of my icky clothes, my phone rings.  C’s senior therapists.  Yes, we will cancel therapy today.  Thankfully, she was nice enough to come and stay with C for a couple of hours while ran to the store to buy additional carpet cleaning supplies.  I had used a week’s worth in 12 hours!  Oh, and she brought me Starbucks! 🙂  Thank you, AZ!  That really made my day!  🙂  Liv and Brian headed out to a Brewer game with some of his family after milking, which was fine with me.  I really just wanted to rest.  (And so did C.)  And that’s what we did.  I kept Christian home yesterday, too.  He just wasn’t himself yet.  I’m glad I made that decision even though that meant that I had to miss meeting up with a friend.  😦  (SM, I hope we can make it work out sometime soon!)  Liv was bored, but such is life some days, right?!?  But, today…Today Christian was back to his normal Christian-self.  He fought me getting dressed, (I mean, REALLY fought me!) but we finally managed to get out the door, and into the car, and then the kids fought ALL the way to school, BUT as soon as we pulled into the parking lot Christian was happy! 🙂  SO HAPPY!  🙂  And I was glad, as I wasn’t sure how it would go, but he dragged me up to the school building.  Happy screaming.  Happy running.  Happy jumping.  Sigh [of relief!]  I’m so excited that he was happy to be back!  🙂  And now, I should get back to my Liv, who has been hanging on my arm for the last 20-minutes…  😉

Christian LOVES his "Kipper" from Build-A-Bear now that the jammies are off! 🙂

Liv with her "Hello Kitty." Yep, that's what she named it! 😉