Monday, August 28, 2017

Eclipse, First Day of School(s), and SPARK Research

**Note**This isn't my picture of the Great American Solar Eclipse of 2017 - My pictures turned out horribly! But I still wanted a picture of the eclipse for the kids to see. So here it is.** 
Monday was the Great American Eclipse, but the world kept spinning. (See what I did there?) Anyways, Rowan had ABA with his new therapist, Shay. Sad to lose his old therapists but life goes on. As long as she treats him kindly and we continue to see progress, I think it'll work.  

We were going to make a cereal pinhole box, but I forgot to. I felt bad that Heidi Anne was going to miss this event due to my lack of foresight. Then I found a cheater way to make a pinhole box (thanks to Google). You wrap aluminum foil around a colander, leaving the bottom uncovered. Put your back to the sun , holding up the bottom towards the sun. TA-DA! Now you have several pinholes to view the eclipse with.

We got 91% totality, which meant we only got a little dim. Not the cool twilight in the middle of the day that places like Idaho Falls experienced. All my pictures of the sun or the cool colander pinhole eclipses turned out horribly. 
On Monday evening Heidi Anne had back to school night. Since we had time, we took a picture by the school mascot, which is a Raptor. We got to meet her teachers, (she has 2), find her classroom, her desk, discovered whose in her class this year. We found out she's going to have a ton of homework this year (4 pages a night, a handwriting assignment, plus 20 minutes minimum of reading) and a diorama project due in March. 

Tuesday was Heidi Anne's first day of 4th Grade. I feel old!! She is going to have a lot on her plate this year. She's into Harry Potter right now and found a few other kids that have read some of the books, too. She had a good first day and the babies missed her. 
Anastasia is learning to drink through a straw! Just a month ago she would choke if she used a straw, but now she can pace herself. Anastasia now has her own water bottle to use anytime she wants. 

On Wednesday for 4.5 hours I only had 1 baby in the house. As luck would have it, Anastasia is coming down with a cold or suffering from allergies. Either way, she wanted attention. It was like she realized "Gee, I can have mommy ALL to myself! Let's have her play with me, pull out every single toy, and get nothing else accomplished today!" To her credit, the last time she got 1 on 1 time with just me, she was in the NICU.  
You have no idea how many pictures it takes to get Anastasia or Rowan to look towards the camera. It's somewhere around 30-40 shots to get 1 good-ish picture. I would be doomed if I had to use film with only 24 chances to get it right. Most of my pictures would turn out like this: Cute, but no cigar.
I discovered that Rowan is in the pre-school program by default at ABA. He still has his therapist, Shay, with him the whole time. He just attends their pre-school program 3 times a week from 9:30-12:00. They started a school for those with autism at his ABA clinic. Currently, there are 3 other kids in his age group and they all signed up for pre-school. They like to keep certain ages together, so he attends pre-school with the other kids. I discovered all this when I got a note saying what school supplies he needs. Don't get me wrong, not at all upset. Just wish I had a little more warning. 

We learned that Rowan knows the song and some of the actions to "The Wheels on the Bus". We kept singing that song and "Old MacDonald". To the point I lost track of time and everyone went to bed late. Ooops, going to pay for that in the morning. 
We got Rowan a new back-pack that is Construction themed (he loves vehicles, planes, and trains right now, but Construction things are the winner by far!) Since he's now a big boy in pre-school, he needed a real back pack. 
Well, this year I didn't take First Day of School pictures for Heidi Anne...I know, big mistake. I thought I could do 3rd day of school pictures and no one would be the wiser. But my phone decided to die and her friend that she walks to school with was leaving. However, I did manage to get a picture of the 1st homework assignment of the year. It works. Why, yes! That is a Pikachu-Pokemon shirt.

After school Grandma dropped by for a quick visit. She's been in Australia for the last month and hadn't seen the kids since we were up at the cabin. 
We decided to let Rowan play outside with his water table. He had a blast and kept splashing the water everywhere and even pretended to drink the water! Although, he did drink some of the water by accident. He was soaking wet and won a bath after we got back inside. Oddly enough, he HATES bath time. Can't figure out why he has this love / hate relationship with water. 
I tried to put Anastasia on the grass to play with the water table, too. But she wouldn't stand for it, literally. She wouldn't even crawl on the grass. We set a towel out for her to sit on but she just wanted to be held, by me.

Over the weekend my phone officially died. It wouldn't even turn on it was that dead. It had been giving me warning signs (like turning off while having a full battery, not charging, dying while taking pictures). This is the last picture it took. 
We choose to participate in an autism research program called SPARK. (A friend of mine told me about it). They take Char's and my DNA, look for any of the hundreds of known autism genes / mutations. They'll do the same with Rowan's DNA, plus put it in a database for future reference, in case they discover a new gene / mutation down the road. That way they can have it to compare to other samples. The program also wanted to sample Heidi Anne's DNA to contrast with Rowan's DNA to see why she doesn't have autism.  

It could take months and they might not discover anything. We did it more to add to the research aspect down the road. Why not contribute to science and medicine if we can? It won't change our minds about being done with having babies. But it could possibly answer where the autism came from and tell Heidi Anne IF she carries those genes that could be passed on.   

All the supplies are mailed to you with a pre-postage box to send back. All the testing and results are free of charge. The only downside is they have to collect 1 ML of saliva (that way they have a lot of DNA to play with). We have found out that Rowan has dry mouth and hates being swabbed. So it's taking sometime to collect his sample (which is likely the important one). We're doing our best. 
Here's their website if anyone with autism in their family wants to join in the research project. 

Monday, August 21, 2017

Celebrations, Check Ups, Braces?

On Sunday we went to Aunt E's house to celebrate (I believe it's 4 or 5) birthdays that all happen within 3 weeks. Cousin H is turning 4 and she got to choose the cake. She picked pink strawberry cupcakes (with real strawberries inside the cake) and strawberry frosting. Char said he didn't mind having a pink themed cake. Since he and Aunt M share the exact same birthday-they're not twins-just 4 years apart to the day! Char had many pink or girl themed birthday cakes they had to share together growing up. 

While we were dating my 2 youngest siblings thought the idea of a non-twin, shared birthday was unacceptable. For 4 years my baby siblings and I would bake a cake for Char the day BEFORE his actual birthday. Sadly, they outgrew this fun little tradition. But it was super adorable of them while it lasted.  

Wait. Maybe I'm getting on a tangent here. Let's rewind and go back to earlier on Sunday afternoon.  
Around 2:15 in the afternoon we get the kids loaded up and started to go down to Aunt E's house for dinner and cupcakes. About half way there, the heavens opened, and out came a deluge. It was raining fast, with big drops mixed with a little hail and quite a bit of lighting. The Interstate slowed down from 70 MPR to 35-ish MPR. We saw motorcyclist hunkered down underneath some overpasses. Plus the screaming from Anastasia and Rowan really helped the situation (not). What should have taken 35-45 minutes turned into over an hour drive.  

We get to Aunt E's house at 3:15 and dinner was supposed to start at 3:30. Somehow, it worked out that just our family, Aunt E's family, Aunt S and her fiance were the only ones able to attend. One sister had work and the other one just adopted a new rescue puppy and didn't want to leave him alone after just adding him to their little family. 

Uncle Z got out a box of toys with wheels on them, so Rowan was pretty content. He kept saying "Train" or "Car". Anastasia just follows Rowan around now and liked the cars as well. Char and I also did damage control with the babies because they wanted to explore Aunt E's house. Plus they both missed their afternoon naps. Meanwhile, Heidi Anne played happily with her cousins. 

Around 4:30 we had dinner. (One thing to know about Aunt E is, she makes everything from scratch.) This dinner and the cupcakes were a labor of love from her. She made a good vegetarian chili, brown rice, a salad, and delicious cornbread. It was so sweet and moist you didn't need any butter added to it.   

Around 6 the babies were getting cranky and it was close to bed time. We had yummy cupcakes and ice cream. I hate eating and leaving but the kids missed their afternoon nap and they're going down for the night around 7:00-7:30 pm. 

Heidi Anne's had her first consultation for braces on Monday. You may have noticed a lack of her pictures lately and that's because she hates her smile right now. She has rather crooked teeth. We can't put braces on until a missing front tooth comes in. Once it comes down, she needs braces.

She'll need them for about a year, then get a retainer. She'll be reassessed after a year of using a retainer. We're just waiting on that 1 tooth.   
Anastasia had her 18 month check up on Tuesday. She weighs 20 pounds 2 ounces and in the 16th percentile (just 5 pounds less than Rowan). She's 30 inches long, which puts her in the 5th percentile. Anastasia started crying as soon as they took us to the back room. I guess she remembered 3 months ago when she got 4 shots at once. Today, she just had 1 shot. 

We tried to do the 18 month assessment, which she failed. To adjust for her pre-maturity we did the 15 month assessment. She barely squeaked by on that one. They also had me fill out the autism assessment, which showed she may have autism. But it's hard to tell just yet due to her being 3 months premature. What we plan on doing is the evaluation again in 3 months to compensate for the age difference. Then go from there. 

With Rowan we knew for sure at this age that he had autism and were able to begin intervention. Right now, Anastasia is developmentally delayed (even for a preemie). But not so delayed that she qualifies for Early Intervention. Apart from that she is pretty healthy overall. 

Anastasia is really starting to walk more. Right now she has issues with different surfaces, so she won't show off her skills that often. When Anastasia walks, she puts her hands up high over her head, bouncing up and down with each step. She looks like an orangutan when walking. 
Rowan had ABA on Wednesday, it was his first session in a week and he doesn't have another one until the 21st of August. I tried to take this opportunity to work on the laundry. I had folded towels and folded / put hangers on the babies' clothes. I left the room for a minute to put some towels away. I came back to find Anastasia had unfolded the laundry and taken the clothes off their hangers. At least she put some of the items back in the basket. She was so pleased with herself. 

Rowan spoke a lot at ABA, he still says words randomly, often without a purpose. However, he talked so much they had a hard time writing down everything he said. On average he'll speak about a row's worth of words, this time he took up the whole page. Even more exciting, some of the words where used in proper context!! I love ABA. 

Thursday we were supposed to go visit Aunt L and go to a cool splash pad near their house. Instead, I got a killer migraine, (nausea, light sensitivity, the whole 9 yards). So the fun plans got cancelled. 
We're working on getting Heidi Anne some guitar lessons. Char taught her some finger strengthening exercises and a few cords for her to practice. As of day 2, she loves the guitar. I think it's good for her to learn an instrument and to have a hobby. I'm not big into pushing kids into activities they don't like, but I might be changing my mind when it comes to music lessons. 
This evening Rowan was super talkative and interacting with us very well. I brought out my phone and on lark I told him, "Rowan, say cheese!" While he didn't look at me, he did say "Cheez!" In shock that he talked with me, I did it again and he said "Cheez!" Apparently, this game only works when the phone is out because as soon as I put the phone away, he wouldn't say "Cheez" for me. Once it was back out, he'd gladly say "Cheez". He can be such a ham sometimes. 

When I get him ready for bed I ask "What does [insert animal] say?" Typically, I carry the conversation for both of us by answering my own questions after a bit of a pause. The pause teaches that I'm trying to communicate with him and that it's his turn to talk. 

Anyways, Heidi Anne was asking Rowan "What does a sheep say?" To which he promptly responds "Qurack, Qurack." 

Encouraged by this I ask "What does a sheep say?" He says, "Maaa, Maaa". Close enough for me and probably more accurate then baaa, baaa. Heidi asks "What does a dog say?" He looks down at the floor but still answers with "Roff, Roff." I was super impressed!! This is huge!

We tried a few other animals but he didn't answer. Like, when Heidi asked "What does a rabbit say?" (Nothing, it says nothing.) Anyways, we circled back to sheep, duck, and dog-getting a response each time. Until he covered his ears, which meant he was getting overwhelmed. I stopped playing the animal noise game and resumed our normal topics of conversation. For example; talking about our day, singing the brush our teeth song, telling him the game plan for tomorrow. 

Saturday, August 12, 2017

Slow Week & Char's Birthday

Slow week here at the house. Well, slow compared to the previous 3 weeks. Oddly, that makes things seem even slower. Morgan is on vacation so Rowan has been doing half day ABA sessions. Come to think of it, that could be adding to the lull this week.

Anyways, the theme for this week at ABA has been super heroes. Rowan painted a face mask (which was mostly green). He also colored a super hero belt (which Anastasia got a hold of before I could get a picture of it). 

Tuesday was pajama day for the babies. Rowan wanted to stay in his construction jammies. Heidi Anne decided she wanted a pajama day, too. Since we weren't going anywhere and no one was coming over, I made it a pajama day for everyone. 
Have I mentioned how much Rowan LOVES the dog. Unfortunately, it's an unrequited relationship. The dog tolerates Rowan, meanwhile Rowan adores the dog. Which is why we plan on getting Rowan his own pup a few years down the road.  
Wednesday, Rowan didn't have ABA because Mackenzie forgot she was covering for Morgan that day. The supervisor offered to come in but it would take her awhile to get there. We figured his routine was already messed up, why not skip a day and deviate even more.  

Since it was Char's birthday he decided to get everyone a treat of doughnuts and soy milk. He took Rowan to the store with him. Which could go 1 of 2 ways, 1)Amazingly or 2) total disaster. Rowan did amazingly. 
Rowan loves taking the dog for "walks" around the house lately. Here he is looking for Anastasia. She'll hide behind the sofa and we'll ask him "Where's Anastasia?" He'll go to her and say "There is!" Or he'll yell "Jaysha?" for Anastasia. This game only works with Anastasia, he doesn't play this game with anybody else. If he does, he'll go off and find Anastasia instead of Char or myself. 
I had a terrible migraine on Friday. Which pretty much sums up our slow week. But you need weeks like this to wind down from fast paced weeks or gear up for them. 

Saturday, August 5, 2017

Dance Party, So Big, and First Steps

We've been told by Rowan's therapist at ABA that he loves dancing. They'll play musical chairs during group sessions. Instead of going around in a big circle around the chairs, Rowan's jumping and moving, having his own little party. We hadn't seen this until Sunday afternoon when the radio was playing. As soon as a fast paced song came on he ran to the kitchen to be closer to the music and danced all over the place. He couldn't stop giggling, having a good time. Char was quick and got some video of it before the moment passed.  
I've made a realization today as I was fixing Anastasia some chicken for lunch. We've bought our last bit of baby food or formula-EVER. It's bittersweet. I'm amazed she's made this much progress over the summer. But my babies are getting bigger!

We're done having kids, 3 is plenty for me. On top of that another baby would be most likely be born premature and / or run a high risk of having autism. I don't think I could do the NICU life with 3 other kids needing me at home and knowing that the outcome of a preemie isn't always as good as Anastasia's experiences were. I know some families that have multiple children with autism but I don't think I could balance it very well. Who knows though, right? After all, you don't know how strong you are until being strong is your only option.
On Monday Rowan's therapist got caught in traffic, promptly followed by getting a flat tire. Rowan is the first child of the day to the office, so they were locked out until the other childrens' therapists came in for the day. Rowan's therapist was over 45 minutes late, which wouldn't phase your average child. However, it totally through off Rowan's groove for the rest of the day. 
 Tuesday was jam packed with speech and occupational therapy for Rowan. Plus physical therapy for Anastasia. His speech therapist is thrilled with the signs of "more", "water", and "all done" he's been using since her last visit. With the mixture of signs, words, and PECS he's really come along way in his communication skills. 

His OT therapist is going to work on his bath time and diaper changes going more smoothly. Right now he HATES both of those things to the point of trying constantly to run and hide or screaming at the top of his lungs. She also taught us how to do deep pressure on his joints and brushing his arms and legs lightly to help relax him at night. She took a look at his weighted blanket for us and will think of ways to get him to use it or a weighted vest to help out when Rowan's feeling anxious.  

As for Anastasia's walking, her physical therapist believes it's just a matter of time and confidence. There aren't any physical reasons for her lack of walking, which is reassuring. Also Rowan's speech therapist is comfortable with Anastasia's communication skills thus far. (A nice perk of of having a speech therapist visit you twice a month).
Later that night, Heidi Anne was trying to play in her room when the babies knocked down the barricades (A.K.A baby gate). She started reading "Brown Bear, Brown Bear" to them. They climbed onto the chair and watched her perform. I could only get Anastasia to look at me and Heidi didn't want a picture in her nightgown. Notice a car by Rowan's side? He carries at least 1 around with him at all times, even takes cars to bed with him the way another child may cuddle a teddy bear at night. 
Wednesday Rowan said "Hi Mom!" a few times. I think he's trying to get my (or his therapists) attention because he tells them "Hi Mom", too. During dinner he said "Hi Mom. Cookie?". I said "Hi Rowan, no cookie." He then looked around the table and said "Hi Mom. Water?" While signing "More". So he was communicating "Hi Mom, [More] Water?". I love seeing him making strides. 
I adore one of his ABA therapist, Morgan. Both of them are sweet to him. But Morgan always has a smile on her face and tries her hardest to write down every single word he says or interaction he makes. That way we don't feel like we're missing out on anything. She's going back to school in the fall, meaning we might loose her. I asked to stay with her, no matter her schedule, but we won't know for sure until next week. (The fall schedule starts on the 14th of August). If we lose her, it just means we'll have to find our new normal (again). We're constantly adjusting what "normal" is for us. Right now, it just means the average weekly routine.  
Thursday, Anastasia got me up early at 5:45 am. She was bright eyed and bushy tailed. She was playing "So Big!" with me. She'd put her arms up and down high over her head so quickly that it looked more like she was doing the wave single handed. Anastasia would even try saying "So Big" with me, it came out as "Oh Bi." Which was adorable (it would have been cuter at 7 or 8 am-ish). 

On Friday, Anastasia took her first real steps! She went from Dad to the sofa and then back to Dad. She walked further every pass. Anastasia would fall down, we'd cheer "Yeah!" while clapping our hands, she'd then clap for herself. Then repeat the whole process. It was amazing. (Sadly, my phone was dead). 

Rowan had a great day at ABA. He was saying so many new words. Things like "Cupcake", "Triangle", "Circle", "Oink". Apparently, there is a book at the ABA facility that makes animal sounds. Rowan loves to press the dog barking and the pig oinking, but will cry if the cow makes a "moo" sound. Even just "mooing" in person to "Old MacDonald Had A Farm" can make him cover his ears. I'll take their word on this instead of experimenting for myself.