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. 

All in the day of a SAHM

Sometimes you have to laugh. If you don't, you will lose your mind. My day so far...

I woke up late. Shoot. I was supposed to wake up early to clean the bathroom before the kids got up. It needs a deep cleaning, the kind where I can't be interrupted 2000 times every five minutes. 

What is that horrible smell? Oh, Zoey has again had diarrhea all over the house. Only now we are out of paper towels. 

The baby is now fussy. I want her to sleep so I can feed the kids breakfast, but every time she is almost there one of the kids comes in and wakes her up, even though they have all been told to stay in their rooms. This goes on for an hour. 

Finally, the baby is asleep! Only now the dog has also pooped on the carpet. Again. And I still don't have any paper towels. 

Ok, poop is cleaned up, kids are eating, time to clean the bathroom! Oh wait, I need to USE the bathroom. Now Tobiah came in and asked for more food. Told him to go and wait quietly at the table, and to stop talking before he wakes the baby. Now Naomi is doing the same. And now Ruth. Oh great, they woke the baby. 

Baby is back asleep, kids have more food, now I can clean the bathroom. Got a bit done, but now I remembered that the diapers that I started the last cycle on are done and I need to hang them and do  a load of laundry. 

Oh great. Somebody let Zoey back in. Yep, you guessed it. She pooped again! Trying not to cry. This house is so disgusting thanks to that blasted mutt! She's going outside. Oh my gosh, you have to be kidding me! The chickens are out AGAIN! Rich just fixed the fence. Oh, I see, he put the fence against the crawl space and the stupid birds figured out they could squeeze out. 25 minutes later and I have them all back and something against the hole. 

Somebody stole the slice of pizza I left for myself. You know, because it's not like they all had two pieces already. So, I'm eating a piece that fell on the floor and is covered in animal hair. It's also missing half the cheese and half the tomato sauce. Going to wash it down with some chocolate covered pretzels. 

Oh. My. Gosh. The cockatiels are freaking out, do I even want to know?! Oh great. One is out, and there is a soccer ball, a bunch of blocks, and a couple play kitchen toys IN THEIR CAGE. Oh, wait, there is also bird seed in both their water dishes. Sigh. Oh well, at least this time the bird didn't bite me getting it back in. 

Back in my room. Oh, looks who is awake. What woke her up? Oh, Tobiah's dog is barking. You know, because he left his room after being told not to for that exact reason. Sigh. 

It is only 3pm. 

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. 

Yet another update

We are finally out of the insane time of the year where I cannot think straight and have zero time for anything. 

A lot has happened in the last couple of months. Little Lucy had some pretty concerning medical stuff going on, but is mostly doing better. She is still a bit behind of where she should be, but she is slowly catching up. She ended up having two tongue tie surgeries, and after the second just stopped eating. She started seeing early intervention due to very low tone, and as of yesterday her therapist was thrilled with the progress after not seeing her for two weeks. She help her head up while on her tummy and played with toys for 15 minutes, then sat in Kelli's lap and played for quite a while. She also showed off some mad skills by sitting unassisted for maybe 15 seconds (she has done about a minute before, but was not really in the mood to sit). As of last Friday Rich finally got her to willingly take a supplement in the form of syringe feeding her. She is still completely refusing bottles, and for the first few weeks screaming like she was dying during the syringe feedings. They have to be pretty thick, but we are thrilled that she is willingly taking more food. Other than that, out blue eyed girl is doing great, she is interacting, smiling, babbling, and bringing us so much joy! It is crazy to realize she is nearly six months old!

Jeanette is also doing amazing. I failed miserably in keeping up to date with blogging her progress, but she is now a very solid, very active two year old doing all the normal two year old stuff. She still gets a little scared when you do things like toss her in the air and catch her, but even that is slowly getting better. She is also completely terrified of walk down stairs and insists on going down them on her tummy, but that's ok with me. She is running, trying to figure out jumping (so stinking cute when they are learning that one!), climbing, and talking. She loves to sing, and sings non-sense made up songs in the car, usually to the tune of "let it go" or "Jesus loves me". Most of the words aren't real words still at this point, but it reminds me of another little girl who has also always loved to sing and now at almost five does it non-stop. Jeanette has officially graduated from PT/OT, which is amazing, and will hopefully be out of ST soon as well.

There isn't tons to report on Ruth. She is still our clown, although she is looking more and more like a kid instead of my chubby cheek toddler. Guess it's time since she is almost FOUR! She will be starting speech therapy sometime soonish (in Corri-ism that means sometime this year, because frankly, I am relishing not having a child I have to take to speech and with two others in weekly therapy still... Sigh). She is smart and funny and still a complete Daddy's girl. In fact, every single time Rich and I try to talk without the kids, she has to come in and climb in his lap. He is far too much of a softy for that girl! She is also still completely obsessed with cats. Reminds me so much of myself as a child. 

Naomi is doing very well, too. Lately we have had far more good days that bad, and seem to be in  by good routine with her. She is getting better and better at knowing what she needs and self advocating. Two weeks ago at church the early childhood department had a "family day" where the parents got to hang out with the kids and each class had an activity to do with the kids. It was very hard for Naomi, and she was able to make it known through pulled on my hand that she needed out of the room, and when I asked if the place I took her was quite enough or if she needed it to be quieter, she told me she needed quieter, which is huge for her. She then calmed down and did fabulously the rest of the time we were there, although is had to really engage her a couple times. I honestly expected it to be a disaster with the complete chaos, but she proved me wrong! She also did something incredibly huge about a month ago at Costco. We were walking around, and all of a sudden she yells with complete panic in her voice "where's Ruth?!" Ruth was fine and just walking behind Rich, but my girl was aware of somebody other then herself and showed concern, which is incredible. Sure it was Ruth, her buddy, partner in crime, and closest friend whom she is never without, but I'll take it!

Tobiah is also doing really well. We have had some major breakthroughs with him in keeping him calm and capable of listening. It's still a process, and I really don't think we have seen the full effect of this awesome new way of working with him. I think it will be a huge transformation just like it has been with Naomi now that we have unlocked how to get through to him. He is still my little smarty pants that loves to learn and never forgets anything. Reading has unlocked the world for him, and he spends hours reading each day. Space, bugs, ocean life, pirates... His interests are 100% boy. He is also loving school using Sonlight. He blows through most of it, but he really loves the set up, and especially loves all the reading involved. Other things haven't changed at all, Danielle is still his "bestest best friend", he still loves riding his bike (and has gotten quite good), and he is still very protective of his sisters...when he isn't tormenting them.

Elli has grown and is hitting that age of inner struggle between being a child and not. It's bittersweet to watch, and I personally hope that being a child continues to win just a little while longer. She is still the same compassionate person she has always been, although she has started to get a bit of a snotty attitude towards life.  She pouts when we make her push a cart, and often whines at the injustice of being the oldest and being expected to help with simple things. She is still typically helpful, and adores her younger siblings. She often asks if she can help with things like giving Nette a bath, getting Lucy in the car, and making breakfast. She is definitely growing up. She's also finally caught the reading bug and carries a book just about everywhere, and she, too, seems to really enjoy school using Sonlight. She also got an awesome bike for Christmas and is bound and determined to learn to ride it. It was not cool in her book that Tobiah learned first. 

There have been a couple other changes. We somehow have multiplied in the fur baby department. Jeanette was given a kitten named Oliver, and he's a sweet little guy that loves to snuggle with Lucy (just like Sadie, my sweet kitty I got when I was in labor). Tobiah got a dog, a sweet but somewhat dense yellow lab. And at the end of the month I'm getting the puppy I've wanted for 15 years. Her name will be Princess Buttercup. 

We are also in the process of building a house (currently looking for land), so we can fulfill life long dreams of living on a farm. I'm quite excited, but will post more about that later. 

Other than that, life has just been "normal" around here. I'll try not to go months without blogging again, and will be doing my next Sonlight post soon. :)