Game changer

April 12th 2015. 

It seemed like a day like any other. It was Sunday, so we got up, got the kids ready, and headed for church. 

Naomi didn't seem extra happy, or uneasily unhappy about church. It was just what we were doing, and it was routine and fine. 

Leading up to this game changing day, I had been overwhelmed to hear that my sweet child had "made a new friend at church". This was huge folks. The child who had only ever played with one child outside of our family at that point. Yeah, her. She had made a friend, all.on.her.own. Since that time, she had also been willing to interact with friends that came over a couple of times, which was equally big.

This day though? It was even bigger. 

I walked back to her class after church to pick her up. She was engrossed in playing with a doll house, and I briefly wished it could be one of the weeks she ran to me, knowing I would have to pry her away from it. As I walked in, though, her teacher came up to talk to me. I braced myself. I have come to expect unpleasant news, hearing that she was unusually attached to the teacher, wouldn't follow directions, or the one I really dread, she had hit or kicked another child. This time though I heard something completely unexpected. 

"She did amazing today. She TALKED TO ME. Like she asked me 'can I please play with the doll house'."

At this point I was staring wide eyed. What? My child WHAT? Sure, I hear it all the time. Naomi has an amazing vocabulary, and there are days I regret the 2.5 years of speech therapy she went through because she never.stops.talking. That is at home though. That is with me. Her siblings. Usually her dad. Not her teacher.

The teacher went on.

"She got in the tent with the other kids. We went through the church whispering to people 'Jesus is the good news', and she whispered it in somebody's* ear."

Wait. Wait, this can't be right. She whispered in their ear? She PLAYED IN THE TENT WITH THE OTHER KIDS? This isn't Naomi. Naomi is terrified of people she doesn't know, and touching them is miles from her comfort zone. Naomi also can't handle being in enclosed spaces with people other than her family or the handful of people she's let into her "safe circle". 

It's at this point I don't remember the conversation. It's at this point I broke down and wept tears of joy and gratitude. 

Gratitude to my gracious God, that my precious girl has come so far. Gratitude to this amazing women, who at the beginning of the year had no clue how to handle Naomi, but always listened to what I suggested, and gave my child immeasurable amounts of grace and patience. She will never understand the miracle she has been for my family, she will never comprehend the level in with God has used her to bless my family. 

She's been our game changer.

*the teacher told me who it was. I don't remember. Point is, it is not somebody that Naomi is familiar with.

What I thought autism had stolen

Nae-Nae is such a sweet girl. She just found Rue's Hello Kitty figurine and, despite the fact Rue is sound asleep, tucked it next to her, and when I looked to see what she was doing said "I was just giving Rue-Rue this".

I had big dreams for those two when I found out I would have girls so close in age. Those dreams included them being best friends and doing everything together, walking hand in hand through life, snuggling late into the night talking instead of sleeping.

By the time Ruth was born, it was obvious something was "off" with Naomi, but everybody kept telling us (mostly me) that it was in my head and that she was just different than my older kids. The first year of Ruth's life was a challenge with Naomi, and she hated Ruth. Absolutely hated her. By the end of that first year, I knew beyond a doubt my child was autistic. Rich was coming around to the same realization. My dreams were slowly being completely shattered.

Then something beautiful began to happen. Ruth started engaging Naomi. At first Naomi did not like it, but Ruth was relentless in her admiration of her big sister, and her desire to play. Slowly, day by day, she chipped away at Naomi, until one day they played. I sat in the living room with tears pouring down my face as I watched them. They would chase each other from the living room to the kitchen, and one would climb in the corner cupboard (I believe Ruth), and the other would slam it shut, then climb out and chase back to the living room. They did this for quite some time. Normally this is the kind of play I would not allow, and so many times I was sure fingers would be smashed, but I could not bring myself to stop them. Nobody ended up hurt, thankfully.

From that day on, I saw a transformation, and they played more and more. For a long time, it was always Ruth that started it, but in time Naomi started, too, and eventually they were always together. 

Autism has shaped their relationship in many ways. I've had to give up on some of the dreams that I had for them, like the cuddling and hand holding. It's typically like pulling teeth to get them to hold hands, unless it is to swing each other around. On the rare occasion that Naomi wishes to cuddle, well, let's just say she's a little overbearing. Maybe that, too, will change in time, but for now I revel in the relationship that they share. They are best friends, and not in the way I dreamed-in a much more beautiful, and more profound way than I could have ever pictured. Ruth is Naomi's safety, her constant, and her example. What I thought was stolen by autism has been made indescribably precious by autism. 

Today you are five

Tonight I put my five year old Nae-Nae to bed. Five years ago I was snuggling my perfect, teeny little baby. I was soaking her in. Marveling over her beauty. Day dreaming about how much fun Elli would have with a sister. It's been a long journey, many sleepless nights of crying for answers, and knowing in my heart of hearts exactly what was going on. We've walked through fire for that child, we've almost lost her, we've cried over her, we've stood up for her time and again. We've put literally thousands of miles on our vehicles, we've put "medicine" on her eczema in the middle of the night, pinned her down to stop her from scratching herself raw. We've seen her grow by leaps and bounds, learn things we were unsure she'd ever learn, face down fears. We've climbed to the mountain tops, and fought for each inch, and we've wept in the valleys, confused and hurting. It's been a hard, long road, but look at her now! My amazing Nae-Nae. My sweet girl, my joy. 

For you, child, I'll gladly do it all again. 

Sometimes, autism sucks.

I try very hard to have a positive attitude about Naomi's diagnosis, and most of the time this comes fairly easily. I think she is one of the coolest kids around, and she brings so much joy and happiness to the lives of those around her. Really, I don't just say that. She's downright awesome. Her silly faces, her knack for seeing beauty in the ordinary, her insistence on being Messy Nae-Nae. She is a true joy. 

Sometimes though, it hurts. And when it hurts, it cuts me to the core of my being. Tuesday was one of those days. 

We were at Awana. I have tried hard not to let this be a sore subject for me, because my goodness how I was looking forward to having two hours a week with just Rich and the babies. It was going to be wonderful, and we were going to be able to reconnect and have time for deep conversation, which is so lacking in my marriage these days. God had different plans though. We were told pretty early in the year that both Naomi and Tobiah were only welcome at club if we stayed. So, I've been in the Cubbies room all year, while Rich follows the Sparkies around. It is what it is.

Anyway, we were at Awana. We have been going since September, with both Naomi and Ruth in the Cubbies class. So here I sat all night watching my daughter once again refuse to interact with the other kids. I watched her play with duplos, in her own world, then pick them up. This time she didn't throw a fit when it was time to put them away, which was an improvement! Then we got in line and went to "hold up the wall" while everybody took a turn going potty. Once again, Naomi refused to do any of the silly little activities, like finger exercises, toe touching, and jumping. She stood there, leaning on her hands against the wall, with a blank expression. When her sisters were by her, she wanted her arm around them (I've been taking Nette to be an honorary cubby since hanging with dad and the sparks is so boring), but neither really wanted anything to do with it. Then she sat quietly for the puppet show, as usual. She actually asked for a song when it was time to sing, and I'm so proud of her for that! She has definitely gotten more comfortable with Teacher Wendy. Then back to the class, and when asked for a prayer request she just said "God", which the teacher always interprets as being thankful for God, but in reality Naomi is telling her that is who you pray to-she has yet to grasp the concept of a prayer request. Then snack and craft. She was too over stimulated to do anything but scribble, which made me a little sad because she is such a great artist. At least this time she scribbled inside of the lines. Then the part where I finally lost it. Play time. 

At the end of the night the kids get to go into the gym and ride on trikes and those little cars you sit on and push around. Naomi of course asked for her favorite car, to which I of course had to say no, because it causes too many fights. Then she was off. Completely in her own world. When the other kids got too close (as in right in her face) she would push them. It pretty quickly ended up with her quietly in my lap while I sat in the doorway. I did eventually coax her to go play while I went to talk to the leader. I asked if I could bring snack next week, and if I could bring something special for Naomi's birthday even though we hadn't done anything for other birthdays. Awana is the day before her birthday, and my hope was maybe if the kids made a big deal about it, maybe for one night she would acknowledge them. That's when I finally broke down. It's been sometime since I cried, but it finally all hit me again. My child adores her "almost twin" and sometimes her other siblings, but other than that, she is so oblivious, and my heart hurts for her. I know she wants to have friends, but every time she has tried, they have been mean and not wants to play (not that I blame them, she's pretty controlling...). I have yet to go to Awana and not hear one of the other children complain about her, whether it be that she is hogging Legos, took somebody's Legos, kicked, pushed... It's always something, and it is always a knife in my heart. 

Yeah. My kid is pretty awesome. She brings beauty and insight to the world that i marvel at. She brings joy and laughter. Still though, sometimes autism sucks. 

Triumph in the midst of the storm

Last night Tobiah was having a really hard time. I think he was over tired and his blood sugar may have been off a bit, but he had been told he needed to clean his room before he could come out after Rich got home. This escalated to one of the huge screaming, kicking, banging, throwing things tantrums, so we calmly went about it in our normal way, taking a stuffy away every time we had to remind him not to stomp, kick the wall, or throw things, talking to him calmly, reminding him to take deep breaths, and so on. After about 30 minutes, he was FINALLY mostly calm and doing an amazing job cleaning his room. Then Elli came along... She very meanly and snottily said "we're having applesauce", just to be a jerk to him and upset him. I have to say though, Tobiah shocked me. He paused for a second, then said (granted in an equally snotty tone) "well I can have some when I am done, and I'm almost done anyway!" When questioned exactly what had been said to him (I only heard his response, but given what he said and how he said it I am certain he was being truthful), he also said that what Elli had said had really upset him and made him angry.

I am flat out amazed with my son. This is my boy who has a hard time regulating emotions, and often has a hard time expressing himself. He was only maybe 20 minutes out from one of his all out huge, out of control, not coping at all tantrums, but he did not take Elli's bate and get all worked up again. He kept calm, held onto the knowledge that if he did what he was supposed to he would get his applesauce like the girls had, and told Elli off. He handled it better than I've ever seen him handle a hard situation like that. I'm so impressed, so proud, and so amazed. I'm also full of hope that we are getting somewhere, and now have something big to remember in the midst of his tantrums. My boy will overcome, he will learn to cope with emotions, and he will succeed in life.

For the record, Elli got in a good amount of trouble for antagonizing her little brother and for the next week will be learning about serving others through cleaning his room for him daily. Hopefully she will not only think twice before being mean again, but will learn something about what it means to serve and love our brothers and sisters instead of leading them to stumble and sin.

Life with autism is...

...letting your child come in the bathroom, when you just got woken up by a loud firework, are having contractions, and really just want SPACE, and letting her sing you the ABCs, because she wants to "show you something", and letting her get closer and closer to you as she sings until she is almost touching you (remember you're still on the toilet), and then excitedly telling her how amazing she did when she is done, because, well, you love her, and these silly moments are what make her so amazing and special. And the part that is truly life with autism? You don't have to fake it. You truly do love it. You live for these special times with your child, you focus on them when she is staring at you blankly not recognizing what is going on because she's just too overwhelmed. You hold them in your heart when she is screaming because her favorite dress is dirty and she just cannot wear it for another day. You store them up for all the times it hurts, it is hard, and it is scary, because it reminds you that while autism brings many challenges, it brings more beauty.

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.

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.