Reflecting

I was going through my "on this day" I'm Facebook and encountered this video that I made four years ago. 

Watching this stirs up so many emotions. 

First the obvious. Looking back at this video and watching my kids play four years ago, it melts my heart and brings up a tinge of sadness that the days of these two being three and one and a half are long gone. Sadness that I can never go back in time and relive these moments, and pain that they are gone. Pictures are hard enough to look at, but hearing that little boy's three year old voice, and watching them run around and be silly is so much harder, yet wonderful at the same time. 

Then there is the deeper level. At this point in our lives, I had been concerned for about a year at some of the things Naomi wasn't doing, and in my heart of hearts I knew she was autistic. That still terrified me because I didn't know what I know now. However, at that time I wasn't so acutely aware of the concerning things she WAS doing, and watching this I see signs screaming at me that I couldn't yet see. At this point in time I still allowed everybody to convince me my concerns were invalid and that she wasn't autistic. I hadn't found my mama voice yet, although I was just starting to in regards to her other medical conditions. It was still a few months after this that I really started researching and started pushing for answers, and it was six months later when she was first evaluated, and we were told while she tested autistic "technically", the doctor wasn't sure enough to diagnose a 25 month old. I left that appointment the way I had so many before, allowing somebody else to repress what I knew as truth (although looking back, I do agree with the psychiatrists decision to wait a year to be sure, as I left with him telling me to come back at three if I still had concerns). 

We have all come so far in our own ways. I've found my voice, and I will use it with every breath I have to advocate for my kids. Naomi is miles from where we were at this time. Notice in the video you only hear her voice twice, when T is pinning her and she whines ever so slightly and at the end when she said Bubba instead of bye. She was completely non-communicative at this point. We did occasionally get a word out of her, but it was typically not used correctly, as in this example. Most of the time she would only scream. Now she talks nonstop. That's just one example. She's a completely different kid, and she amazes me daily. 

I'm thankful for progress, but I'm equally thankful for small reminders like this video of exactly what that progress looks like. 

Like I said, so many emotions...

When the special needs journey gets hard

Today we were officially told Lucy has global developmental delays. Significant delays in every area of development.

It's not like I can deny how delayed my little girl is. I live this reality every minute of every day. Hearing that is crushing though.

I have four special needs kids. My second, third, fifth, and sixth. I am able to see improvement in each, over time, and I've learned to cling to those small, sometimes almost invisible, improvements. I've learned in the dark times to reflect on the progress, and to rejoice in every single milestone reached.

Tobiah has improved a lot in his social struggles, and with help can have successful social interactions. 

Naomi will sometimes talk to people she doesn't know. 

Nette can walk and is becoming more confident in climbing. 

Lucy can orally manage solids and drink a half full or less bottle without needing to constantly stop.

All of these things might seem small, but for them they are skills that we've fought so hard for. 

I work hard to focus on the positive, and to keep the right attitude about their challenges. I want my kids to know that nothing is impossible when they try their best, I want them to know I believe in them, and that I will always be their biggest cheerleader. I want them to know I will never stop fighting for them.

There are times, though, that these things are so hard. What I heard today, despite already knowing it, felt like a punch to the gut. Days like today I find myself crying out for mercy, desperate for improvement, longing for this life to not be my own. 

Lately so many special needs parents have blogged about finding a way to just accept things and be happy. While I think being encouraged to keep a positive outlook is so important, because having a positive attitude is a key piece to successfully parenting special needs kids, I think dismissing the negative and refusing to acknowledge it is far from healthy as well. 

Sometimes this road is hard, and sometimes it hurts like crazy. Not because you are devaluing your child and having a pity party, but because as a parent you want every good and perfect thing for your child, and facing significant challenges, while perhaps is your child's reality, isn't the good and perfect we desire.

The point I hope to leave with you is that it's ok to have bad days. It's ok to have days you hate the challenges your child(ren) face. Acknowledge your feelings, and do what you must to deal with them (my personal favorite is expensive chocolate), so that tomorrow you can wake up the fighter and advocate your child needs.

Work boxes

For this year, we have decided to give work boxes a try and see how it works for our family. I have very high hopes that this will streamline a lot of our schooling and help us to be more efficient with our time. I feel like over the last year we had a steep learning curve balancing schooling four children, and while I definitely feel like we got into a routine that worked, there is always room for improvement. 

Earlier this week, my amazing husband created all the files I needed. We are using strips in the kids colors to put their daily tasks on, then the tasks have a coordinating task card on a box. Because we have specifically chosen to use Sonlight for the ability to combine kids for core subjects with ease, and we teach in pairs that share books, each pair will have a set of drawers verses each individual child. For the task cards, I found images on google that I liked, that had both a picture and a word so that they work for both readers and non-readers. We then printed those, their strips, and a set of numbers (also color coded) for each child on card stock, had them laminated, and I spent an hour and a half cutting them apart and applying Velcro dots. I'm rather pleased with the finished product! 

As you can see, all the task cards were printed on white card stock, while their task strips and numbers were printed on colored card stock. I admit by the time I was done cutting them apart I was on the verge of stabbing my eyes out, but it was worth it. We only have six task cards so far, plus two "help buttons" per child (for when they are working independently and need my help to finish), but I plan to make more. This is what I needed to get started this coming week, and time was limited the day Rich made everything for me, so it is what it is for now.

The way we plan to do this is each day, each child will have their task cards filled with what they need to do that day, in the order I want them to do it. The items they will need for each task is then placed in the correct drawer, and on the front of the drawer on the right will be that task, and on the left the correct number in each of the two children's colors. As they complete a task, they will take their number card as well as their task card from their strip and put it in the "finished" box. Once they have completed their entire task card, they are done for the day and can work on their chores and then have free time. Their task strips will be hole punched and put on a key ring, but my hole punch is currently hiding from me so I'm unable to do that part quite yet.

We decided to use Trofast shelves from IKEA. Many people (most that I've seen in my research) use bins created for scrapbook supplies, but after reading reviews I was a bit nervous they wouldn't be sturdy enough. With Sonlight, there are a lot of books, so I need something strong enough for that, but equally important, my kids just tend to be hard on stuff. These were not too much more, and I know from years of using them for toys that they can withstand my kiddos. 

I'm excited to see how things go this week, and will be updating with our initial thoughts after week one, so stay tuned!

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. 

On the eve of your fourth birthday

Put my three year old to bed for the last time. Tomorrow she will be four!

Four years ago right now I was laying in bed. Rich had just gotten off the phone with the midwife, explaining how miserable I was and they had agreed to induce two days later, assuming at my appointment the next day everything looked good. I was feeling a huge mix of emotions, relief that the weeks of painful contractions were coming to an end, sorrow that I was not going to go into labor naturally and for the first time have the "it's time" experience, and also many mixed feelings about being induced on my birthday, as I had not wanted to share my birthday. I think I was mostly feeling relief, though. 

Then it happened. I had a really strong contraction, and when it ended, Rich and I looked at each other, and without a word we both got out of bed and started getting ready to go to the hospital. 

My labor was miserable, nobody at the hospital would take me seriously despite this being baby number four and knowing my body well. I spent basically my entire labor in triage, was forced to walk through transition (or go home), and finally got my own room just in time to push. 

At 5:23AM the next morning, a chubby 8lbs 10oz baby came into the world screaming. She was perfect. She was exactly what I did not know I needed in my life.

Ruth Ann, you are a brat. You refuse to go to bed on a nightly basis, you rarely follow my directions, and you constantly swipe my coffee. 

You are also a constant source of laughter. You're a clown at heart, and you just love being silly. You bring immeasurable joy to those that you open up to. 

You truly are exactly what we needed. God has already used you in such amazing ways in four short years. I greatly anticipate witnessing what He continues to do in and through your life as you grow. 

I love you more than words can say, my little Rue-Rue Bean. 

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.