Autism Awareness April 4th

Autism Awareness April 4th

I apparently published this on the wrong blog. Whoops!

I talked a bit about how Naomi plays. So today I am going to talk about Tobiah's favorite play. Since before his first birthday, he has been obsessed with anything that has wheels. To this day he will line his cars in a perfectly straight line and lay with his face in the carpet looking at them. He will take one and play with the wheels, then roll it slowly back and forth on the floor before putting it back in line. He completely flips, and always has, if anybody so much as touches his car lines. Naomi's very first way to "play"? Why go kick his cars and laugh while he flipped out, of course! (She was barely one when she started that, and honestly these days it's mostly Ruth)

We have had MANY cars lose their wheels over the last five years. His obsession has never been limited to cars, but anything with wheels. The obsession is not slowing down, either. 

I recently saw a post on Facebook of a perfectly straight line of cars that said something along the lines of "Just because autistic children cannot draw a straight line, doesn't mean they do not know that one is". It made me laugh. My autistic kids are very artistic, but I can still relate to the car lines.

Naomi does play like this as well, but not as often. Her preferred way is collecting, and in turn that manifests in very limited, perceivably normal ways for Tobiah (he has a rock collection, and is very obsessed with "complete" sets of toys like Imaginext). Each autistic child is different, but both of these behaviors are very common.

I will get a picture the next time he does this and update the post.

Viability

With every pregnancy I have breathed a little easier when we have reached the point of viability, which is typically considered 24 weeks (there are babies who make it before then, but 24 weeks is when the baby has a 50% chance of survival or more). It is always a huge relief to make it to this point because I know that if something awful were to happen, my baby would have a fighting chance.

This time, I have waited rather impatiently for this day to come. As I have brefly talked about in a previous blog, we experienced some complications at the beginning that put my baby at a higher risk of not making it. I have what is called a subchoriatic hemorrhage. This is actually a fairly common thing, and I even remember being told in a dating ultrasound I believe with Ruth that I had a small one. That one resolved and never caused a single issue, which is the most common outcome.

With this pregnancy, I started bleeding. The part that made it the hardest is this bleeding started about an hour after we told our kids (at the Thanksgiving dinner table) that we were going to have another baby. The bleeding was very heavy, and then the cramping started. We were sure we had lost our baby we so desperately wanted. We spent that whole weekend convinced she was gone, then I went to the ER Sunday night because I couldn't take it. The doctor found her on the ultrasound, her little heart beating. I was elated, but that was not the end of the roller coaster. 

We spent the next two weeks in and out of appointments and hospitals, one day it was good news, the next it was bad or suspected to be bad. The bleeding finally stopped after a couple of weeks, and I was relieved until it started again. For me, it never completely stopped. It has continued to come and go, and each time I stress a little more because I'm at an elevated risk of my placenta detaching.

So, here we are at viability. I can finally breath a little easier. I still want our sweet little girl to stay right where she is for at least another 13 weeks (although if she follows the trend of the others it will be more like 16.5), but it is a huge weight off my shoulders to know that if the worst were to happen, she would have a fighting chance.

Autism Awareness April 3rd

One thing that autistic children are not is flexible. They are schedule and routine loving people, and thrive with those two things. 

We have a pretty good routine. One of Naomi's favorite parts of her routine is her speech therapy that we go to on Thursdays.

Last night we got her to stay in bed by telling her she had to go to sleep so she could wake up and see Natalie (her therapist). This morning we got her in the clothes *we* wanted her in by telling her Natalie wanted to see that pretty dress. We drove all the way to Seattle with her asking every few minutes how much longer until she saw Natalie. When we got to the hospital where her therapy is, she got so excited and said "yay!" Then we got upstairs to check in, just to find out nobody called us to tell us therapy was cancelled this week.

Autistic children are not flexible. Today we narrowly avoided one of the worst melt down, freak out, kicking and screaming tantrums... Because I told Naomi we would do anything she wanted, besides see Natalie. She cried. She started to freak out. It took every trick I've learned, but we avoided it. Today was nothing short of a miracle.

Folks, that's life with autism. I swore I'd never be that type of parent. I swore my kids would learn to deal with disappointment. When living with autism, you learn to pick your battles very carefully, and you figure out when the battle is not worth it and do whatever is needed to maintain order. 

Thankfully Naomi wanted to play with friends, and we just so happened to have a friend that could play. Like I said, today was a miracle. The last time this happened, I left carrying a kicking and screaming child that I almost dropped repeatedly, and she screamed the entire way home, because NOTHING was good enough to replace what she had planned out in her mind.

We have dealt with this in other areas, too. It is because of her inability to cope with the disappointment of something she is told is going to happen not happening that I never tell my kids what we are doing until we are there. That's life with autism. You learn to avoid the let down. You learn to just give in and buy them ice cream to eat in your freshly cleaned car because you forgot five days ago you said you'd buy them a treat the next time you went to the grocery store, and they remembered. You learn to pick your battles and work within their challenges, and you learn that despite the disapproving comments and looks, that it's ok.

Autism Awareness April 2nd

April 2nd autism awareness:

Naomi is starting to have some great imaginative play. It has come from a lot of work and modeling, mostly by Ruth and I, with the other kids playing with her on occasion.

However, Naomi's preferred way to play is to gather her toys up and put them in anything that will carry them. When this behavior first started, she was two and it was an Easter basket. Since it has been baskets, bags, boxes, toy shopping carts, really anything that holds objects, even when it is too small (which is often a source of great frustration that leads to some of our bigger tantrums that we still frequently have-small compared to the past though). Her favorite is her dinosaur backpack. If she is playing this way, she completely flips out if you try to take anything from her collection, which is very frustrating to the other kids since she is not "playing" with it. This is a major source of fights in our house.

Rich and I were cleaning the entry way and found this box. We both sighed then laughed. This is such a common thing to find in our home.

I think the funniest I ever discovered was when we changed the master bedroom from the playroom to our bedroom, and I went to put something in one of the master bath drawers, and could not open it because it was crammed so full.

The most embarrassing and upsetting was the time she attached to a little tin at the Goodwill, and refused to give it up even to have it ringed up. Once we were in the car and had left, we discovered she'd filled it with random little toys.

Autism Awareness April 1st

Yes, I know it is April 2nd. I had every intention of starting this yesterday, and life got the best of me. So, here is my first post, and only a day late. ;)

April 1st autism awareness:

Naomi sings this song hours every day. The words change, but she's been using the same melody for a couple of years. Before she spoke (approximately 26 months is when she first started using words), it was a wordless song. Naomi has loved music since before she was born, and has a natural ability for it. Not all autistic children do, but quite a few do. This is one of the beautiful parts, but it is also something that can be very trying. She does this CONSTANTLY. She's not often quiet about it. Especially in the car.

In other news, Naomi's creative play has gotten a lot better. We work on this daily.

Oh, and please, pretend you don't see my clean laundry waiting to be dealt with.

Autism Awareness Month

April is autism awareness month. I decided that each day in April, I will post a little view into how our lives are touched by autism. I typically try to keep things upbeat when I talk about autism, because I prefer to look at it in a positive light. However, as a mother of children who have autism, I also feel it is my job to educate and give insight. Autism can be very challenging for both the autistic child and the parents, and a lot of people see the moments of struggle and cast judgement. This is a serious problem, and one I hope to start to change by teaching others about life with autism. So, some of my posts will be the upbeat, silly, and beautiful side of autism, and some will be about the challenges. My hope is that by the end of the month, everybody who reads them will have a better understanding of what our lives are like, and will have experienced a glimpse into the world of autism.