Childhood Redefined

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Sometimes, I feel so guilty about D. From the moment he was born, all he’s ever known is a life that revolves about his sister’s therapy schedule. Every afternoon, starting at around 2pm,  he is cooped up with me in our house (or sometimes our backyard) while E receives in-home ABA services. I think back to E’s toddler years when she was the same age that D is at now and I remember we’d spend entire afternoons at the park or at a baby-friend’s house for playdate. We’d go run errands together or just enjoy being outside with our toes in the grass. Sometimes we’d stay home and have a lazy day, watching cartoons in our jammies and spilling Cheerios in the crevices of the couch. They were blissful and sweet days we spent together and I feel like D is getting a little bit robbed of that.

Of course, we do still spend tons of time together and when the weather is nice we go out into the yard almost the entire afternoon so as not to bother his sister. We have the option to go out with E’s therapist and go somewhere fun (which we have done) but you know, it’s just somehow not the same when you’re being accompanied by someone else. When winter with its colder weather hit our area last fall, I resorted to iPad & cookies to coax D into staying in his room during E’s therapy sessions. Our house isn’t very big so it’s really easy to distract E if we’re out in the common living area (living room or family room). The one place we could be without bothering her was D’s bedroom – which isn’t exactly the largest room in the house.

After a few months of iPad & cookies, iPad & cookies, iPad & cookies, day in and day out, I realized that I’d set up a horrible routine for D. He would wake up from his nap screaming for the iPad and for a sweet treat to accompany it. I decided right then and there that we needed to break the habit, cold turkey. He’s 2 years old now so he’s entering that age that I used to teach back in my preschool days; I should know how to engage him and keep him busy. His mind is a sponge at this stage and it was irresponsible of me to be filling it with Mickey Mouse and sugary goods every – single – day.

The weaning process was rough, I’m not gonna lie. He screamed and threw tantrums, and it was overall a pretty miserable experience for I’d say a good week or so. But now, I think he’s officially been rehabbed from his habit. He loves to build legos and play with his train table. Books and puzzles can hold his attention span for longer than anything on the iPad or TV. I’m working on teaching him the alphabet, colors, shapes, etc – all the things I’m sure he’ll be working on when he starts preschool later this fall. And there are of course still days when we pull out the iPad and cookies but those days are few and far between and definitely are seen more as a luxury than the norm.

I’m so excited to see his curiosity blossom as his learning grows. Even though this portion of his childhood may look different than his sister’s did, it’s still precious & unique to him. And I’m trying to soak up as much of it possible because he’ll never be this adorable, chubby, little 2-year old again. <3

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Super Hero Protector

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D recently turned two years old and he’s starting to really play & fight with his older sister. E may struggle with social skills but D is definitely typically developing and has no problems whatsoever in that area.

He alternates between tender adoration of E and then stealing her toys and making her cry. It’s so much fun to watch them at this age as they negotiate the terms of their siblingship and learn how to live and play together. I hope their bond only grows deeper and stronger as they age and I hope that D grows into the type of man who will always be there to support his sister.

I struggle as mom to both of them between balancing my desires for E and balancing my desires for D. Sometimes the two are mutually exclusive. On the one hand, I want D to be the hands and eyes for E that I could never be. I won’t be able to be at school, watching her like a hawk for bullies or other difficulties, but D eventually will. I hope he develops a strong sense of protection for his big sister and learns to fight for her if she doesn’t have the skills to defend herself. But on the other hand, D is just a little boy, too and he didn’t ask to be born with a special needs older sister. I don’t want his life to be defined by her difficulties. I want him to be burdened for her but not by her, if that makes any sense. How do I balance the two? How do I teach him to be compassionate for her and not selfish in his own desires, but also give him the freedom to grow up and be a man outside of his role as her little brother? I don’t know, I don’t have the answers. I’m desperately praying that God give both J & me the wisdom we need to raise this curious little boy into a godly young man. I’m sure we’ll mess up along the way so I’m also desperately praying that He give D the grace to be fine despite our mistakes.

Ah, man. Sometimes I think it’d just be easier if my kids both stayed 4 & 2 years old forever.

Contentment

When I was in elementary school, I was obsessed with handwriting. Other people’s handwriting, that is. Other people’s beautiful, neat, well-scripted, handwriting.

Not that my own penmanship was poor, but it wasn’t the same as the girl next to me’s handwriting. I would spend my days forcing myself to imitate my classmate’s handwriting and in every new grade that I moved up into, I’d find a new muse to imitate. I’d set her as my new standard and strive to emulate her at all costs.

Until one day, in sixth grade, a girl who I’d always thought had nicer handwriting than me, turned to me and sighed wistfully, “You have such pretty handwriting, Sophia. I really like it.”

Whhhaaaaat???

Mind. Blown. Could it be that during the years I’d spent pining over what other girls had, other girls were in fact doing the same thing to me? Is what they say about the grass being greener on the other side really true?

The answer is, yes, it always is. And the sad truth is that no matter how many times I have this epiphany I somehow always struggle with contentment. It may have started with something trivial like penmanship when I was 10 years old but two decades later I find that I’m still fighting it, except now it’s maybe someone else’s kid or someone else’s house that I’m comparing.

I think when you’re in a position like I’m in, it’s especially easy to let Mr. Compare Bear out of his cage – why does my daughter have autism but that family doesn’t struggle with anything? Why does my kid need to go through this difficulty but all the other kids don’t?

But what I’ve really been convicted of, and continue to be convicted of over and over again, is that any resemblance of a lack of contentment is truly a manifestation of pride. It’s only my pride that tells me that I deserve something different or better than what the Lord has seen fit for our family. If I humble myself to His will and plan for me, then I won’t have the desire to side-eye and see what’s going on with my neighbor. It’s for sure easier said than done and I’m nowhere near perfecting it, but I’m hoping that putting it in words into this post will help serve as a personal reminder to keep my eyes fixed on Christ and not on others. If you struggle with this too, let me know and maybe we can help keep each other accountable :)

The Impossible

A few weeks ago, I was stopped by E’s preschool teacher when I came in to pick her up from school. She approached me awkwardly in a motion that, as a former preschool teacher myself, I recognized immediately as body language for “I need to speak to you about something important.”

I froze. What could it be? Did something happen at school today? A flurry of thoughts bombarded me as I tried to read the teacher’s face … did she have good news or bad news?

“I just wanted to chat with you real quick and let you know that … well, I think E is ready for regular preschool if you were interested in placing her with some typically developing peers.”

Say what now?

To clarify, the preschool that our daughter attends is an early intervention program provided by our school district. It’s a free program but to qualify a child has to be at least 3 years of age and have a significant enough of a development delay that early intervention is required. The kids in her program typically have a diagnosis of some sort, everything from autism to Down Syndrome.

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When we first placed her in this program, it was when I was in the thick of the fog as I now like to refer to it – that first year post diagnosis when I was still struggling with the fact that autism was going to be a part of my child’s life and our family, whether we liked it or not. Her dad & I obviously both had hopes that eventually E would catch up to the point where she could be with other kids and it wouldn’t interfere with either her or the other kids’ learning experiences. We still hope for the day that we enter an IEP meeting at her school and get told that she doesn’t need any additional support anymore. And that may happen for her eventually! And it may not. But regardless, I just never imagined that I’d be told something like this before she even started kindergarten. When you want something so badly you almost don’t even dare to think about what the day it comes true might look like – to do so would be to tempt discontentment if it doesn’t happen. So all this time, I’ve just been putting one foot bravely in front of the other; focusing on the here & now and praying & planning that the Lord do what He wills with E. I usually don’t think too much about the future because I don’t know what to expect. So to be told at this point that as far as a preschool setting is concerned, our daughter is ready and able, is incredible news. It took everything in me not to hug her teacher on the spot and squeeze the life out of her.

I still don’t know what’s going to happen regarding kindergarten placement for E – whether she’ll be mainstreamed or what not. Realistically, she will most likely still need some kind of support during kindergarten … but I’m not going to dwell too much on that right now. For now, I’m still celebrating the fact that she’s come this far and I’m so proud of her for it.

Um… Hello?

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Um, hello? It’s 2016? Happy holidays, happy new year, happy Wednesday.

If you haven’t noticed yet, I seem to go through cyclical waves with this blog – waves of posts where I can’t get them written out quickly enough, the words shooting out from my brain through my fingertips in a flurry, and then periods of silence where I can’t seem to find my inspiration or motivation. I know that January is almost over and New Years’ resolutions are already a passed trend, but I figured better late than never. At the end of each year, I typically like to reflect over the previous year and see what goals I can strive for in the new one. There are a few things that I’d like to grow in and improve on in 2016, such as my prayer life and reading the Word on a deeper level, but the most tangible thing I’d like to work on is this blog right here. For me, if I can just create and stick to some sort of consistent posting schedule, I will be happy with myself this year. I don’t know what that exactly is going to look like yet but wait for it .. I promise, good things are coming.

Also, the hubby & I are headed out of town for the next couple of days for a little “getaway” (I’m following J on a business trip). We’re dropping the kiddos off with their grandparents and heading off to Seattle just the two of us. I have a full spa day booked tomorrow and I am beyond excited for some peace and solitude – even away from J. As you can see, one of the other things that I’d really like to do is get a few blog posts written out so that I’ll have a few in my “queue” to get me started. I’ve got a list of blog topics burning a hole in my pocket and I think a few days away from my kids will give me the motivation I need to get those churned out.

2016, I’m excited for you!

Grace

Today was a rough day.

I was impatient and short with E when really all she needed was an extra measure of grace from me. The morning started off great; she’s always in such a superb mood that J & I often joke that aside from the autism she is our perfect child… like, God had to make sure to include special needs into her when creating her otherwise she would be too perfect. She had a great day at school, too, and was in an awesome mood when I picked her up after lunch. A teacher had french braided her hair into one long plait and she was excited to show me her “Elsa braid”, as she called it.

And then it happened. Sometime in the (literally) 5 minute drive home from school, one of her tiny Ugg boots fell off her feet and took her sock captive along with it. That wasn’t that big of a deal to her except that when we got home, I tried to convince her to just go into the house from our car without her sock on and just her shoe. She wasn’t feeling it; she reeeaaally wasn’t. And if you know anything about autism tantrums, they can often go from 0-100 in a blink of an eye. Before you know it, your child can go from mild whining to full on display of anger without enough time for you to even process what is happening.

That is what happened to us. Right there in our driveway, just 20 feet from our house, she had the biggest meltdown I’ve seen her give me in a L O N G time. I’m talking splayed out on the concrete, limbs flailing wildly, screaming howling at the top of her lungs. May I remind you, this was in our driveway? Where all our neighbors can see and hear?

I could feel the red flush of embarrassment creep from my ears down to my neck. It would have been easy for me to just give her the grace and let her put her sock back on first but sinful stubbornness & pride won out and I NEEDED HER TO OBEY ME. NOW.

By the time I got her back into the house, I couldn’t control my anger. Or, rather, I probably could have with some prayer and calmness, but I chose not to. I disciplined her (which I shouldn’t have) and put her to bed for naptime by slamming her bedroom door shut to let her know that I meant business.

I sat down on the couch, my anger simmering and then giving way to my own hot, frustrated tears to match my daughter’s wailing sobs coming from her bed. Hers eventually quieted down as she cried herself to sleep and I forced myself to choke mine down since the therapist was due to arrive soon. It didn’t take very long for me to feel so completely terrible about everything that had happened.

Before she started her therapy session, I gently woke her up and apologized. She was so upset that she woke up with a start, the way someone only does when they’ve fallen asleep in a completely hysterical and upset mood. She was still feeling sour towards me. I tried to give her some of her favorite honey graham crackers and she threw them in the trash; I said, “Hi, E” to her to elicit some response and she glanced at me morosely and replied, “Bye.”

Her mood eventually lightened and she forgot what had transpired, as most kids are wont to do. I asked her for forgiveness a second time and this time she readily gave it. The “I love you’s” and kisses started flowing abundantly once again.

I’m not going to blame today’s situation on autism; at the root of it, the issue is sin – both mine and hers. Autism complicates it because of the communication barrier and E’s lack of ability to regulate herself & her moods. But if E didn’t have autism, I can’t say that we wouldn’t have had epic moments of sinful failure towards one another anyway (mainly my sinful failure towards her).

I like to say that God gave us E because He knew she would grow us in the areas we needed growth. I was reminded of that conviction so strongly today. As I look at her and see the need for me to give her grace, I’m pointed back to my own Heavenly parent who also looks at me and not only sees my need for grace but freely pours it out. As I see how easily she forgave my sinful display of anger towards her, I’m encouraged to just as easily give the same forgiveness to my husband or others around me.

I debated over whether or not I should write this post because on the surface it just looks like a written log of what a crappy parent I was today. I was so ashamed typing this out and seeing my sin written down so plain for anyone to read but this blog is raw and honest and I’m not perfect. (May that be an encouragement to you! None of us are!) I ultimately decided to publish this because I need it to stand as a reminder to myself -and all you other mamas out there (special needs or not)- that an extra dose of grace for ourselves and for our kids can go a long way. More than rules or “rightness”, we need to remember the gospel. I’m hoping today is a lesson that I won’t soon forget.

 

 

Pumpkin Patch 2015

   
    
 

We’ve been visiting the same pumpkin patch since E was 6 months old, and we always go the weekend before Halloween. They have this giant growth chart ruler and we usually take a picture of the kids in front of it to see how much they’ve grown in the past year. It looks like E has grown 2 inches in the last year and D has grown … 6 inches?? I don’t even know if that’s accurate but it’s fun to see them pose in front of the same prop year after year :)

We just had a field trip with E’s preschool class to a different pumpkin patch yesterday so she wasn’t too excited about going again today. Nevertheless, we dragged her and took the necessary photos. I’m sure the kids will appreciate the effort it took when they get older. Hah!

E’s Best Day Ever

A couple of months ago, we noticed E’s behavior taking a slight downward dip. She seemed crankier and more difficult to deal with and J & I couldn’t figure out why. She’d always been so sweet and compliant and all of a sudden she was a monster child. After talking about it for a bit, we felt as though E might benefit from some special mommy & daddy alone time, without little brother around to steal attention. We decided a special weekend trip to Disneyland might be just what she needed so we booked the necessary arrangements, dropped D off with my parents for a few days and headed on over to the Happiest Place on Earth.

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We originally had booked just one hotel room for us to all share and had our fingers crossed we would all get some good rest since we don’t usually bed/room share with our kids like that. (We ALWAYS have multiple rooms booked when traveling with our kids.) But when we checked into the hotel, they gave us a free upgrade to a suite which was super nice because E had her own sleeper sofa bed and bathroom all to herself and J & I could close the door after she went to sleep and hang out/chat/eat munchies in peace.

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This being a sporadic weekend trip, and J not wanting to take any additional days off work for this, we only had ONE day (Saturday) to spend in Disneyland. I wanted to make it worth it and really special so we started off with a character breakfast inside the Plaza Inn off Main Street. This is the breakfast where Minnie Mouse and a bunch of other characters (more peripheral characters, like Winnie the Pooh) come out and greet you at your table. E was so, so excited to see all the characters but I think she didn’t know how to handle herself so she would playfully push or pretend to kick the characters. She thought it was hilarious but J & I were mortified and told her very sternly that if she did it again, we’d leave. I was super stressed out because she didn’t seem to understand us at first, but I just kept repeating, “NO kicking. No pushing. Gentle hands, give hugs and high fives.” And she eventually seemed to understand. The food here, by the way, was mediocre, but it was nice that we didn’t have to wait in any line to meet Minnie Mouse over in Toon Town.

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We had the Park Hopper ticket so after breakfast, we actually left Disneyland and walked across the way to California Adventure so we could get all the Frozen stuff done in the morning. I wasn’t sure how long the lines to meet Anna & Elsa would be so I wanted to be sure we stopped over right after breakfast in case we had to wait some ridiculous amount of time. Surprisingly, the lines to meet them were not that long — you have to pull a return ticket in order to see them and we pulled our tickets at 9 AM and got to see them at 10 AM. Not too bad, right? Not to mention, that there was absolutely NO line to meet Olaf. We also managed to meet a few of her favorite Disney Junior characters and check out the Frozen Sing-Along Show while we were over there.

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By the way, she was so star struck to meet Elsa. Anna, she seriously could have cared less about — Anna even tried to hold her hand and E said, “NO!” but Elsa? She just stared at her and touched her dress lovingly … LOL

Afterwards, we hung around and rode a few rides/ate lunch before heading back to the hotel for a nap.

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E got a new Elsa doll that she was attached to the entire weekend. Not like she doesn’t have enough Elsa dolls but this weekend was all about her so I indulged her in every way possible.

Anyway, like I mentioned, we tried to get back to the hotel so that she could take a nap but homegirl fell asleep during the 10 minute walk  back to the hotel room and even though we waited for 2 hours back at the hotel for her to fall asleep again, she refused to nap.

I’d read on the Disneyland website about a special princess makeover that you could get at the Bibbibi Bobbidi Boutique and I knew right away that I wanted to book one for her. If there’s ever a time to be spoiled rotten for no reason, it’s when you’re 4 years old and at Disneyland. The package we chose included a special princess dress, crown, wand, full hair & makeup makeover, photoshoot with Cinderella’s carriage, and a personal escort to cut the lines and meet the princesses in Fantasy Faire. It was expensive but worth every dollar to me. The look on her face when they sprinkled the glitter on her hair and put the crown on was priceless; I hope this is a memory she keeps for a long time.. and even if she doesn’t quite remember, at least we have tons of pictures!

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The makeover was the highlight of our day. She wore the Ariel dress around the park for the entire day and at the end of the night when I had to give her a bath and wash off all the glitter from her head, she was so sad she cried and cried. Today is Monday but she’s still wearing that princess dress, even as she’s receiving ABA therapy right this minute hahahaha.

We spent the rest of Saturday eating dinner at Cafe Orleans in Disneyland and watching the parade & fireworks. The Paint the Night parade they have at Disneyland right now is seriously amazing; it was so beautiful, even I was excited to watch it as an adult! Disney knows how to put on a good show. The fireworks started right after the parade ended but sometime in between the two, E KNOCKED OUT in her stroller. I tried so hard to wake her up for the fireworks but she was out cold. J & I watched the fireworks ourselves before deciding to call it a night and heading back. We were all so exhausted, we’re still feeling the after-effects today. But I think it was worth every ounce of effort. E seems a lot happier after receiving so much individual attention from both her mommy and daddy, and the whole day was so magical that I can’t be mad at how tired I am today.

Being surrounded by fairytales and princesses, I honestly found myself thinking a lot about E and how there are so many parallels I see to her situation. Like most fairytales, E is a princess because her Heavenly Father is King of all Kings. She’s got a great inheritance coming, all those who claim Christ as their Savior, do. Before we can fully reach our inheritance, though, there is a curse that surrounds us, as all good princess stories have some kind of curse involved. For us, the curse is sin and the world we live in is a sin-cursed world where everything is fallen and nothing is how God originally intended it to be. E’s autism and her brokenness in that sense is a result of the curse. We’re all under the curse in some shape or another; the great hope, though, is that we know this curse ultimately has no power over us. It’s been defeated by the great Prince of Peace by His ultimate sacrifice on the cross. Though we may not see it fully manifested yet, it doesn’t make it any less true. I love how in all the best stories, good always wins and it’s no different for us in real life. Though we may be plagued with disease, hardships, heart aches, poverty, persecution, or whatever other trials we come across, we know that our biggest battle has already been won and good will win in the end. I loved watching my little princess twirl around and enjoy her special day, but I hope that one day she comes to truly understand her worth as a daughter of the King; I hope to see her in heaven perfected and released from the curse that plagues her; I hope she believes that good already won when He died on the cross for her and I hope she comes to claim Him as her Savior one day.

Words From Little Man

Of course, seeing E slowly grow in her language is such a joy for us but we also have a typically-developing child who is in the prime of his language acquisition right now. 

D is about 21 months old and his vocabulary/grasp of language has amazed me since before he even turned 1. We only ever had his sister to compare him to, so we weren’t anticipating a literal baby – who couldn’t even walk yet – having the ability to learn and remember words. Surprise, surprise for us; he had a consistent vocabulary of about 30 words just a few months after his first birthday. 

Today alone, he’s surprised me with three new words that I had no idea he knew. In fact, I don’t even know where he learned them .. Maybe from grandparents or his sister? 

  1. I was sitting him down in his stroller and he grabbed the buckles and said “BUCKO.”
  2. He stumbled a bit while splashing in his toddler wading pool and came over to me and said, “wet ….”
  3. We were reading a book and he pointed to an instrument and said “jum” (drum). 

It’s so much fun talking to him and hearing his attempts to talk back. He babbles “sentences” and intersperses actual words in there so we have to constantly be on our toes and really listening to what he says because usually there’s real meaning to it. 

I just love our little man!

Is It Friday Yet?

Can I tell you about my day?

  
Some real talk here, this has absolutely nothing to do with parenting a special needs child. This is just the nitty gritty of what being a SAHM to two small ones looks like sometimes. All day I’ve been feeling like it’s Friday only to realize that it’s Thursday *facepalm*. 

I’ve been extra tired because the past two nights I’ve had reason to stay up wayyyyyy past my typical bed times. Today I actually fell asleep during E’s therapy session and then startled myself awake because I thought her therapist was standing over me but then realized it was just my piano since I’d fallen asleep on my living room floor ….

It’s the last stretch of the day before backup arrives (aka Daddy) and I’m trying to feed both kids dinner. Only, for some odd reason D is extra clingy and in his attempt to hold wildly to my chest, he swipes my entire face from top to bottom with his grubby, sweaty, toddler boy hand, and then RIPS my shirt from clutching it with his death grip. 

I pry him away from me only to notice that E has found it funny to open her mouth “ahh” and spill out her dinner from her mouth to the floor so that the dog will come scrambling to eat it up. As soon as the words “STOP E!!” come out, she starts peeing on the floor. I don’t know if this is because she was laughing so hard at the dog or because she was startled at my sudden yelling or because she was just TOO STINKING LAZY to get on the toilet. 

I whisk her away to the bathroom and come back to the scene of the crime just in time to catch D about to step in said puddle of pee. I yell “NOOO!!!!” and he of course is startled and starts screaming/crying at the top of his lungs. 

By now E is back from the bathroom and once again spilling her dinner from her mouth to the floor for the dog and at this point I am just DONE with Thursday. You hear me, Thursday? I’m FINISHED with you!!

Is it Friday yet?

Oh, and Hubby just texted me that he’s gonna be late from work. Awesome.