February 3, 2017

An Update on Kase {Autism}

Kase is now (almost ) 4 1/2 and was diagnosed with autism in September 2015, a week after his 3rd birthday.

A lot has happened since then. A LOT! But today I am just going to update on what's going on now.

He goes to "school" (his ABA clinic) for about 27 hours per week. Monday 9:00-3:15, Tuesday 9:00-2:15, Wednesday 1:00-3:30, Thursday 9:00-3:15, Friday 9:00-3:15. Ten of those hours are in a small preschool-like setting with a couple other kids. There is a lead teacher and then each child has their own individual therapist. They have a curriculum and it's very much like a regular preschool, except obviously there are only 3-4 kids. They do circle time, handwriting, free choice, crafts, songs, recess, snack, etc. They take Kase's individual goals and incorporate them into a group setting.

The rest of his hours there are individual therapy sessions. In general, he does better in the individual sessions because he still has a hard time being around his peers. It's definitely gotten better and it's something they work on every day, but he still prefers the one on one sessions with his therapists. They send us a note home every day in his backpack to let us know what he ate, what he did at recess, what he chose to do at free choice time and how he did at circle time. I love these notes and yes, I realize this is ridiculous, but I've saved every single one. I love seeing notes like "played a game with a peer for 20 minutes" or "initiated going to the bathroom today". Maybe some day I will allow myself to toss them. Maybe. :)

In addition to those 27 hours, he (as of January 1st) gets 2 hours of speech therapy and 2 hours of occupational therapy at a different clinic. He goes there Wednesday mornings from 8-10 and Saturday's from 11:00-1:00. I'll be honest, I kind of hate that he has to do therapy on Saturday's. But it's what he needs and thankfully, it's really fun there for him. So far he's done a great job and has been excited about going there.

As far as potty training goes, he's doing great! He's in underwear all day, even transitions to and from therapy. He's still in a diaper or pull up at night, which is pretty normal and not something I am worried about at this point. Eventually we probably need to avoid giving him milk before bed so that it's easier for him to stay dry all night, but with his eating issues, we're not willing to take that away from him. The bottom line is that he needs calories. Right now that's more important.

During the days, he rarely has accidents. As I'm typing this I don't even remember the last accident he had. He doesn't usually tell us he needs to go. We just know he hasn't gone in awhile so we tell him it's time to go potty and he goes without any protesting.

I won't get into bowel movements too much because really, who likes to read about that? But that's kind of 50/50 right now with successes in the potty and accidents (usually at night when he's got the diaper on). He's making progress with this though for sure!

His eating. Oh, his eating. This has been a big challenge for us for a long time. I'm currently doing a food log for his therapists so I will find out for sure the number of foods he eats, but I'd say it's 10 or less. He used to eat more, but then just stopped. He used to love pancakes and french toast and now refuses them. His favorite things are chips (either Doritos or sour cream and onion Pringles), cinnamon applesauce, fruit loops, mini muffins, pop tarts (either strawberry or smores), and graham crackers. He eats a few other things, but those are his go-to's.

Now, let me explain something in case you're thinking to yourself, "give him something and make him eat it" or "if he's hungry, he will eat". Trust me, we've been there, tried that. If he's hungry, he WILL NOT eat. He would absolutely starve himself. We've dealt with this for almost three years and we've tried it all. It has caused major stress on our family. Thankfully, his team of therapists are helping us. They are professionals and are trained for this. After crying in a meeting with them and telling them I just don't know what to do anymore and we need help, they promised us that they are going to help us. I know I say it all the time, but those people are seriously saints. The day we started there in August I felt like a million pounds had been lifted off my shoulders. I don't know where we'd be today without them.

Like I mentioned, I am currently filling out a food log and they are putting together a plan for Kase and his food therapy. We should have a copy of that by next week and I'm really excited to get this started. One of his favorite foods used to be toast and about two years ago he just stopped eating it. In the last week, he has eaten a few bites of toast I think on three different occasions. He asked for a pop tart one night so we said "toast first, then pop tart" and he ate some toast. He actually ate enough that night that he didn't even want the pop tart. One night we had tacos and we offered him one bite (we always offer him one bite of whatever we're having - he never eats it). He didn't want the taco so he requested toast. I was like, YES! Of course I'll make you toast! He's also in the last couple of weeks had a few bites of lasagna and one bite of pizza. Let me explain why this is exciting for us. Before when we would put a bite of dinner on a fork at his table spot, he would get very upset, run away and hide in his room. He refused to be at the table if that food was near him. Then gradually he'd sit with us and let the food sit there, but he wouldn't touch it. Now he's sitting with us at dinner and actually taking a few bites. What seems like such a silly thing for most people is a HUGE deal for us.

At his 4 year checkup they did blood work and told us he's low on iron. We now give him an iron supplement every other day, which tastes disgusting, but for some reason he takes it pretty good. He doesn't eat any meat. He drinks a lot of milk and he recently started loving orange juice. So our main concerns at the beginning here are going to be iron and protein. They want to start with a couple things that we think he will like and aren't too much of a change from what he's used to. I'm going to start making smoothies and we're going to start trying yogurt. It's going to be small steps, but it's long overdue. I have complete confidence that a year from now I will look back at this post and be amazed at how far he has come with his eating.

It's been hard for Kyla to understand all of this, but she does great with it. She's a great eater and even if she doesn't want something new we're having, she always tries a bite and then always ends up liking it. It's taken her awhile to understand why Kase won't eat it or why he gets to have something else, but as she's getting older, she's really understanding of the situation. Then there's Kenley who (at this point) will eat pretty much anything. Just this morning Kase ate two bites of toast and then she grabbed the rest and ate it. I am noticing that if Kase sees Kenley eat something he is more likely to try it. You can really tell he's watching her and I can just see the wheels spinning in his little head like, "Hmm, maybe that stuff isn't so bad."

He still hates getting his haircut, which we need to do this weekend. He just hates people touching his head, but add the water being sprayed on him, the combing, the buzzing of the clippers...it's really hard for him. And extremely stressful on Tyler and I.

He just recently started enjoying playing outside in the snow. Once he's out there he LOVES it. The process of getting all the gear on has been a challenge. He used to ask to go outside, but then when we'd get his stuff (snow pants, boots, etc.) he'd change his mind and just not want to go out anymore. Then he would let us put his gear on, but cry the entire time. Now he whines a little bit, but this schedule has made a huge difference. After he moves the snow pants over to All Done, he will say "Where's my boots?"  Then, "Where's my hat?" So this schedule really helps to distract him and he can see what's next and then he's done and gets to go outside.

He still dislikes wearing boots and when I put them on he always says "Want my shoes."

He (for the most part) sleeps really well. I always feel very thankful for how great of a sleeper he is because I know it's very common for kids with autism to have severe sleep issues. He still shares a bedroom with Kyla and they both love it (except when he steals her blankets). After I say goodnight and slowly close their door, I can hear...

"Goodnight Kyla."
"Goodnight Kase, I love you."
"Love you Kyla."

That little conversation makes me forget about anything hard that happened that day.

He doesn't nap anymore so he's exhausted and ready for bed by about 7:45 every night. He usually wakes up anywhere from 6:30-7:00. This morning it was randomly 4:10, which means things could get interesting when I pick him up at 3:15 today. Overall though, sleep continues to be great!

He interacts with his sisters a lot more now. He's always had a special connection with Kyla, but he's really taken to Kenley in the last couple months. Just this morning before we left he said, "Come on Kenley, let's go downstairs." She didn't come at first so he came over and grabbed her hand and said it again. Then they both went downstairs together. It was the sweetest! :)

He has always done well with adults. Even if he doesn't know them or hasn't seen them in awhile, he will go right up and talk to them, climb up on their lap, etc. Kids are a different story. We have a long way to go when it comes to peer interaction and social skills. This is very common for kids with autism. Adults feel safe and predictable. Kids are scary and unpredictable. And want to play with your toys and take your balls.

The boy LOVES balls. He got a ton of cool Christmas presents, but his favorite by far was a little Spiderman ball that my Grandma Barb got him. He likes to sit at the top of the stairs with tons of balls, throw them down one at a time, go downstairs pick them all up, come upstairs and do it again. And he gets mad if he can't carry them all in one trip. He's just like me. If I have to bring stuff up from downstairs, I would much rather pile it all in my arms and take the chance of dropping something than taking a second trip. He definitely gets that from me. He tries and tries until he gets them all in his arms.

One of the scariest things about Kase is that he doesn't have a sense of fear or knowing what isn't safe. He doesn't have the ability to understand that it's not safe to walk in the street. If we're out in a crowded place, he doesn't have that sense of wanting to stay close to us like most kids have. No matter how many times I tell him my flat iron is hot, he doesn't understand that touching it will hurt. We have sufficient locks on our doors and I plan on buying door alarms that will go off every time the door opens, just in case he does decide to take off. I also recently learned about the Angelsense GPS tracking device and I'd really like to get one. It's kind of expensive, but when I think about the peace of mind and the possibility of it saving his life some day, I think it's worth the money. Call me dramatic, but when you see stories on the news and read the statistics about autistic kids wandering, I would like to take any precautionary measures we can to keep him safe. It's a real issue and one that will likely get scarier with Kase in the next few years. If you're interested in learning more about the Angelsense, read this post by Autism Daddy.

A couple weeks ago Kase's lead therapist came out to our house and we had a really nice conversation. She reminded Tyler and I that he's now getting over 30 hours of therapy a week and he works HARD when he's there. They push him. She doesn't want us to feel like we're not doing enough at home because he's doing so much there and working so incredibly hard. She obviously doesn't want us to just let him do whatever he wants when he's at home, but she wants him to relax and have fun and just be loved. It's something I struggled with for a long time and still do to a certain extent - when to push him and when to just love him and comfort him and let him be.

I have good days and bad. Most days are good and I'm able to focus on how far he's come in such a short time and how he's so happy and funny and playful. I mean seriously, the boy is hilarious! I have days like last Thursday where I wake up to him saying "Good morning Mom and Dad!" and can't help but get tears in my eyes because I remember not that long ago wondering if or when he'd call me mom. I have bad days where I'm sad because I wish things were different. For our January family adventure we went bowling and it was nice to get out as a family, but it was like reality slapped me right in the face. No matter how many times we pick him up from school and they say he had a great day, things are hard. I'd love to just be able to write about how awesome he's doing and how much progress he's making. But I feel like if I want people to truly understand and accept and love, I need to be real. When Kase is upset, he throws himself to the floor. He did this several times at the bowling alley and a few times at the Children's Museum last Friday. He would lay at the bottom of the slide and refuse to move, while the line at the top of the slide got longer and longer. Thankfully that day his therapists were there to help (I told you they were saints!). Even at home if we tell him to do something that he doesn't want to (like put his milk cup on the counter instead of throwing it on the floor), he will go put it on the counter and then run into the living room and fall on the floor. It is absolutely an attention seeking behavior so I just ignore it and don't look at him. It's something we've talked to his therapists at length about. It's one thing to deal with it at home, but the times we do choose to go out in public, it's MUCH harder to deal with.

So yes, I am thankful and feel incredibly blessed. We have an amazing life. But sometimes things are just plain hard. Sometimes I feel like I'm suffocating. And I can't allow myself to get on Facebook anymore because sometimes seeing little boys playing t-ball or families going on vacations is just too hard. Sometimes, I just can't help but wish things were different.

Never in a million years did I think I'd have a child with autism. And now I feel like I think about autism every minute of every day. The appointments, therapies, paperwork, phone calls, insurance issues, it doesn't end. And it never will.

I've said it before and I will continue to say it...I don't know in what capacity, but I truly believe Kase is going to change the world some day.

Thank you for reading. Before Kase's diagnosis I knew very little about autism. Not only does sharing our story help me, but I hope that it helps others as well. In the end I just hope that it encourages people to be a little more understanding and accepting. If you have any questions, please ask!

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