Sleep tight little one.

Why is he acting out? Why is he having tantrums? Why does he always seem exhausted at the end of the day? Why does it seem like such a struggle?
Questions we’ve been asking.

Answers we’ve been given.
He needs sensory input. He needs a nap each day. He needs to be able to fall asleep on his own. He needs behavior modification. He needs timeouts. He needs a picture schedule.

I called his ENT. I made an appointment. I asked for them to call in an order for a sleep study. It has been over a year since his last one and I frankly didn’t know what else to do at this point. We need some real answers. The sleep dr. called and said it isn’t going to tell them anything we don’t already know. He has mild apnea but not that bad. But come in to the office and we will chat about it.

So we went to the sleep clinic. Talked to the dr. for over an hour about what we see, what we experience, what our routine is like, why we want another study. He agreed there’s obviously something going on. But his main conclusion is Owen just isn’t getting enough sleep (even though he “sleeps” for 12 hours each night) he believes he still needs a nap. His suggestion…get him to fall asleep on his own each night so he isn’t comforted by us laying with him. Then maybe during school he will take a nap.

The alternative suggestion? A stimulant to help him make it through his day. Ritalin. That is the easiest fix. The other one? A cpap machine but he just didn’t recommend that since he thought it would be to difficult and not sure the apnea is that bad to need it.

No one thought another sleep study would be needed. No one but Jason and I - so we pushed for it and asked. It felt like there was more to this story. Jason spent Thursday night with Owen at Childrens Hospital. Maybe Owen knew we needed him to show the dr.s what was going on. Maybe we just go lucky and that night Owen decided to let them hook it all up. Whatever the motivation it worked. He didn't refuse like he has every other time. He didn't try to yank every cord out like he has every other time. He cooperated. He was a trooper.

It was a rough night. But they both made it through. And then I got a call the next day from the sleep dr. It seemed that sleep study showed them a significant disruption in sleep. A big enough difference from last time that they now think the CPAP is what we need to do to help this little guy sleep better at night.

We start our new journey sometime this week. We are hopeful this is the answer he needed.

It isn't always about learning your ABCs

At the beginning of the school year I worried we hadn't prepared Owen enough. He wasn't ready for reading, math programs, science, writing and knowing his ABCs. I was so worried about how behind he is. Each week this worry gets pushed a little further away. The worry is there, we still push him to try to keep up. But I have learned in the last few months what is really important right now. Right now for Owen, it isn't about knowing his ABCs. It is about building relationships. Making the right choices. Being a good partner. Communicating in the right way. That is where he is thriving and I am so excited to see this because it is something very positive to focus on. We don't always get to focus on the things that are going well. Mostly the conversations are about the struggles and trying to solve the problems. But it seems that if we shift this focus it gets a little less overwhelming.
I am not sure I would be able to make this shift without the help of his teacher Mrs. Schnackenberg. So if you are reading this Susan, thank you for opening my eyes to this. Your daily emails are always so positive. Always a perspective that reminds us what he is doing well. Sometimes there is a bad report, but it is in a tone that makes it seem like no big deal. But I know my Owen, and I know he can be tough to handle sometimes ;)
He has a few kiddos in his class that are always on his daily report as sitting next to him at a program or playing with him at free choice. He is making some long lasting friends. Opening their hearts to the differences he has. One of them is a little girl named Olivia. She motivates Owen, she watches out for Owen. Sometimes reminding him but always being a good role model for him. We invited her to his birthday party but unfortunately she has plans. She was pretty disappointed so her mom sent me a note asking if they could have Owen over to their house to play. She wanted to give him a little gift and to spend a little extra time with him.
It was one of those emails where my heart stopped. It was that moment of acceptance that I have always worried about. It came unexpectedly for me. It may just be kindergarten but it really is the beginning of the journey. Olivia may not know the impact she has on him but we do. And we are so thankful to have her as Owen's friend.

How did he do? About how I expected. I let him play there by himself. I stayed for a few minutes then left him there. He of course wasn't nervous or didn't get shy or sad when I said I was leaving. He just waved, said bye mom and told me "Merry Christmas". They played for a little over an hour and then I picked him up. He didn't want to go home but then finally understood it was time to go. He still doesn't understand the concept of boundaries or manners all too well so he was all over their house. Upstairs, downstairs, in everyone's bedroom you name it, he explored it. Thankfully Olivia's parents were very understanding and just went with it.
A simple gesture of a playdate has gone a long way for Owen and for us. It has opened our eyes to the potential of being treated just like everyone else. He is after all more alike than different.

I am thankful for times like these where we have such good things to think about. To know that things are going well. To know he is doing well with something. To put one of our worries away for a while.

The guy in the red suit and white beard is SCARY

Owen used to be fearless. Completely willing to do anything, talk to anyone and jump off the highest of platforms. Lately he has started to develop some fears. He is afraid of the rain. He doesn't like when it snows. He is afraid of the dark. And now the big one, he is scared of Santa.
We have been talking about Christmas with him to get him excited about the season. Except anytime we mention it he always responds with "No Thanks". Not only is he afraid of the Santa in person he is afraid of anything to do with Christmas because he knows Santa is part of it.
This weekend my work hosted a Christmas party for the kids including a Santa. I thought what a great low key event to try and show him Santa really isn't scary....
We walked in the doors and approached the long hallway where we could see Santa sitting in his chair at the very end. Owen immediately tried running back out the door and when we tried to catch him he collapsed to the floor and just started screaming No! I thought man are we really torturing him by being within sight of a real Santa? We scooped him up and walked in a different way. We tried to let him get acclimated to the environment and then just sat on the floor where we could see Santa. He clung to us, heart racing saying no no no no no. I just reminded him we were just there to wave to him. And so he waved "bye Santa".
We inched our way closer a little bit at a time and finally just set him down on the floor next to Santa. He finally got up the courage to walk up to Santa and told him "I'm scared". It was one of those times were I was so impressed with him using his words I almost forgot to work on getting a picture! He touched Santa's arm and then I put him on his lap and there he sat. No crying. No trying to get off. Just completely stiff. And then guess what, I couldn't get him off. He just wanted to talk to Santa and give him hugs.

A simple trip to sit on Santa's lap isn't as simple as it once seemed. This photo took 30 minutes to take. I am glad we didn't attempt a trip to the mall this year because there is no way the people waiting in line would have allowed us that 30 minutes!

It is such a difference in situations. Through the whole experience Olivia just waited patiently for Owen to "be brave" and kept reminding us that she wasn't going to cry because she wanted to be brave and tell Santa what she wanted for Christmas. At times I wondering if it was really worth it. But then we got home and it is all they talk about. Olivia reminding us she was so brave and she got to sit on Santa's lap. And Owen repeating that he is a "good boy".
And then came Sunday, Owen went to another Christmas party with Auntie Erin and Santa was there. He was afraid of Santa again. Maybe next year it will be better...?