Do You Have Autism? Yes or No?

Lucy knows Landon is different. She knows he doesn’t speak yet. So she sweetly asks him hundreds of questions each day in the same format:

“Landon do you want orange juice? Yes or no?”
“Landon do you want your grey shoes? Yes or no?”
“Landon are you taking Monkey to school today? Yes or no?”
“Landon will you play with me? Yes or no?”

All day.

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At the beginning of June, Landon had a pretty intense evaluation by the school district to see which services he would qualify for when he graduated out of the early intervention program and came under their care. We were shocked by the results, and most shocked by the analysis that he was in the “clinically significant” range for Autism Spectrum Disorder. Autism wasn’t even on my radar. I’m ashamed to admit that when I thought of autism, I thought of the most severe and extreme cases of kids totally absent-looking, banging their heads on the walls. That’s not my kid. He loves people. Sometimes he loves them so much it hurts…

So I started this list. And I thought, ‘I’m going to make a list of Landon’s quirky behaviors and it will prove that all the things he does are just normal three-year-old things.’ And then I filled up the front and back of a piece of paper. Seriously? I started questioning every thing I was feeling. What was causing me to press so hard against this?

Armed with the school district’s assessment and my list, I took Landon to his three-year well check. The poor, sweet nurse practitioner who asked, “So how is everything going with Landon?”

“Well, sometimes he does things that are sort of weird. And maybe some of the weird things that he does are getting a little more weird.”

“What do you mean?”

“Well, last week I was outside grilling. I knew the grill was hot so I made sure to talk to Landon about it and why he shouldn’t touch it. I made him say hot ["ho, ho"]. I went in to get the food I was grilling and left him outside with my husband. When I came back, both hands full of food, he gingerly walked over to the grill and pressed his hands against it. He never screamed or cried, he only tried to rub the heat off when his skin began to blister.”

“That’s pretty alarming. Anything else?”

“Well, he likes to scream at his baby brother to watch him cry. It does not feel like menacing behavior, just exploratory. He builds elaborate train tracks in his room and gets mad if anyone tries to put actual trains on them. Actually, I made a whole list of unusual behaviors. Do you want to see it?”

“I think I’ve heard enough to know we need to consult someone with a little more expertise.”

And with that I left the appointment with a list of neurologists to consult 

If you’ve never thought of autism in the United States as an epidemic, you’ve never tried to get an appointment with a doctor specializing in diagnosing it. Wow. Three months. Six months. Every time we made a call, the waiting lists grew longer. We heard the importance of early intervention and we heard the hold music. Both lingering ominously.

When we finally did get Landon tested, he did quite well. Autism tests were made for him: they’re play-based with only adults in the room. No other kids to fend off. There are snacks! And bubbles! He did well yet the doctor still said he had autism! How dare her! And then she began to talk “intensive therapy sessions”.

I left feeling like the only thing the doctor had proved was that he doesn’t have autism. He is a little puzzling. His receptive language is excellent. He’s funny. He LOVES hanging out with adults. Food is the way to his heart. He did great. Let’s get a second opinion.

We found another doctor. Very fancy titles. Professor at a very fancy university. If you leave a message with his office, he will call you back on Monday. He only makes calls on Monday. If you miss his call, you have to hope to catch him the next Monday. We missed his call. When we finally talked, he had the audacity to say it sounded like a severe spectrum disorder. It’s not severe. You haven’t met him. Everyone loves him. Severe?

During this time Landon started school. By God’s grace and divine intervention, his sweet teacher is amazing. VERY qualified. VERY educated. So I gave her a couple weeks to get to know Landon and then called.

“The neurologist said Landon has autism. Have you felt that to be accurate?”

“Well, I’m not one for labeling kids but I’m thankful to know you’ve been pursuing that for him because I’ve seen quite a few red flags during the first two weeks of school.”

“Oh?”

“Yes. I actually have a son and grandson with autism so I feel very comfortable to judge it’s characteristics.”

” Oh really?”

“I would agree with your doctor’s diagnosis.”

“…Oh.”

Five professional opinions later [but seriously...] I’m the only one questioning whether or not my son has autism.

And then came that moment. Wondering why I was still shocked to hear it. What does it really change? It only means we’ll commit more time to his therapy.

It’s not the end of the world. And it actually explains a lot. And calms some of my anxiety to know we could be on a path towards healing. Autism can be overcome. We love him so much. It’s an honor to fight this with him.

I think I’m the one who needs to do the most changing right now. I need to stop asking over and over if they’re sure that they’re sure that they’re sure he has autism. I need to change the question. How do I help my son be the best version of himself?

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K4: First Week

I wanted to start out the week like I’d imagine most classroom teachers do: setting the schedule and expectations.

The general schedule for our week will be to fit in an hour of dedicated school time the four mornings a week Landon has school.

The first couple days were spent introducing Lucy to the workbooks we’re going to start out using. She shows such an aversion to all things written [as opposed to drawn] that I bought a couple of books below her skill level to boost her confidence.

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I also bought one of those packs of blank books at Target and we spent a couple days creating an “About Me” book for her. Here’s her family page where she intentionally left off her brothers. She told me later she’s okay having two little brothers, even if it means she has to keep her stuff picked up.

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The star of the week was this science kit I snagged on Amazon for $8. We did the first experiment where you mix citric acid and baking soda.

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She loved the measuring and quick reaction. We tried it with hot and cold water as well.

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We played a few games and lined the alphabet magnets up in order to clear out the summer fog.

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If you want to get my daughter to sit still for extended periods of time, this fashion drawing pad I got her seems to be magic.

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doll fashion girl had *quite* a few updates this week.

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For anyone with a creative kid who makes you more treasures than you could ever hope to keep, I highly recommend going to blog route. We tried out the artkive app and liked it okay but I had to email the creations when I uploaded them. This way Lucy can go back and check out her work and I don’t feel bad about sending out 15 emails on a particularly creative day.

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Lucy Lately

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Me: “Lucy, you need to get your attitude in check.”
Lu: “Okay, Mama, my attitude is on crack.”

[filling up ice trays]
Lu: “Why are you making icebergs?”

“You know that yesterday a long time ago?”

“Oh Christmas Tree, oh Christmas Tree. Oh how you make me royalty.”

[She has a hard time with cliche-type phrases.]
Let the show be on. 
Let’s put this party on the road. 
That ice cream really hit the day. 
Did you grow up on a farm!? [Were you raised in a barn?]
Okay, people, I want all your eyeballs on me. 

Oh no my arms are stuck. You have to stay in my bed all night. Okay you can go. If you turn on my nighttime song and don’t make too much noise, I’ll let it slip. 

Landon presses the button and the Siri double beep sounds. 
“He’s talking to that robot that you guys talk to sometimes.”

Siri: “I’m really sorry about this, but I can’t take any requests right now. Please try again in a little while.”

Knock, knock. 
Who’s there?
Candy Crush!
Candy Crush who?
Candy Crush Baker!

Lu: “I am a magic wish-granting fairy; what do you wish?”
Me: “I wish for a house that always stays clean.”
Lu: “Can you wish a fun wish? Like, ‘I wish Lucy never had to play alone?’ You know, like a kid wish I can give with the dip of my wand.”

Lu: “Mom. Do you want to play destiny unicorn princess? It’s only for superhero girls but you’re on the guest list.”

Lu: “This is the sword of destiny!! [Holds up Dora the Explorer hockey stick.] … Ooooh. A rainbow.”

Lu: “You’re a mom, so that means you can do anything. Right?”

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1st Day of School 2014

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Lucy’s first day included a trip to the dentist. Whoops.

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All business.

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LJB blooper reel.

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So sweet.

Talking To My Four-Year-Old About Ferguson

I live 5.5 miles from the QT that burned down this week. “My” Target became the staging area for the armored tactical units used throughout the week. When I turn on the news and see places so near my home in what looks like a war zone, my heart sinks.

It’s hard to describe what St. Louis is all about to someone who doesn’t live here. There aren’t words to describe the beautiful diversity that spreads across this city. But, like most cities across our country, it’s broken. There’s heartache and mistrust. There are undertones that have been highlighted this week, magnified even. And it’s close. It’s so close. Close to my home. Close to my heart.

I’ve spent this week trying to figure out how to talk to Lucy about it. I think it’s important that she understand it as much as a four-year-old can. I want to open a dialogue so that if she has a question, she can ask me. It’s our job to raise our children as citizens who understand words like equality, justice, and racism. I don’t want to wait for her to hear them from someone else.

So we talked.

Me: “Hey Lucy. Do you think there’s anything different about our family and Ms. Tracie (Landon’s OT) or Amani (her favorite babysitter)?”
Lucy: “No.”
Me: “Hm. Well have you ever noticed that their skin looks different from ours?”
Lucy: “I guess it is a little different.”
Me: “But that doesn’t change who they are as people you love, does it?”
Lucy: “No!”
Me: “Do you think they’re beautiful?”
Lucy: “Oh yes. I loooooooove Amani’s hair.”
Me: “Their skin is different because people whose grandparents come from different parts of the world have different colored skin, hair, and eyes. We wouldn’t want everyone to look exactly the same, would we?”
Lucy: “No, Mom. I like it.”
Me: “People in our city are upset right now because there are people who treat others different because of the color of their skin, and that’s not something we like. There’s this thing called equality that we believe in, because everyone should be treated fairly. Jesus wants us to love everyone. Understand?”
Lucy: “Yes, Mudder.” [Which is what she calls me when she wants me to leave her alone.]

I have a business degree. I have no background in counseling. Honestly, I don’t know if I did it exactly right. But I did go into the conversation with a few goals.

We can’t tell our kids that race doesn’t matter. To me, that’s like saying Catholicism doesn’t matter because we aren’t Catholic. I wanted her to understand that people are different, but diversity is beautiful. Roots and heritage are amazing, and something to take pride in.

I wanted her to realize there were people in her life already with different colored skin. I honestly don’t think she’d thought much about it. And then I prayed for all of the children who notice that much sooner. Because it does impact their daily lives. And it does impact the way others treat them.

But I love that it wasn’t an issue for her, so I tried to keep the conversation short enough that I didn’t make it into an issue. I love that we live in such a diverse area that she doesn’t find it strange to be around others who are different from her- and that she even finds herself in the minority often.

There are so many facets to this story. There are facts we don’t now and may never know. But I think it’s a great opportunity to talk about the bigger issues it raised. There’s a lot to pray for, but I pray most that we become a community bonded stronger rather than torn apart.

I want her to understand beauty and love. Those are the things I want her to spread. There’s so much beauty here. And we have so much love to share.

Our School “Plans” 2014-2015

If there’s one thing almost five years of parenting has taught me, it’s the need for flexibility. Flexibility is definitely the name of the game this fall.

If you’ll remember, last year we expressed a desire to be a homeschooling family. We still have that desire, but we also have some other factors to consider. I think we’ve talked about Landon’s challenges before so I won’t rehash them here, but I will say that his third birthday has been extremely bittersweet. Turning three means he graduates out of his early intervention program that has been supplying speech and occupational therapies to him for the last 14 months. His services will now be supplied by our county’s special education program. In order to make that transition, we had to first have an evaluation. I talked about that evaluation a bit here, but I’ll summarize that the results were a bit surprising for us. We had assumed we would be taking him to our school district’s early childhood center for speech therapy to supplement the tot school we are doing at home. We went to Landon’s first IEP (Individualized Education Plan) meeting with that in mind, where it was instead recommended that he go to the early ed center for three hours a day, four days a week exclusively in a special ed classroom. We left that meeting feeling rather shocked. We’d been told his therapists didn’t think he would qualify for much, but instead he qualified for the most intensive, maximum amount of therapy available. We asked the opinion of the therapists who have come to know and care for Landon over the last 14 months and they said they thought he would benefit from going to the early childhood special education (ECSE) preschool. After an incredible amount of prayerful consideration, we signed him up. We don’t want our desire to homeschool to impede upon what’s best for our children.

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So here’s Landon when we walked over to his new school to register him this week. I’m really not sure how he’s going to do, honestly. I’m really not sure how I’m going to do, honestly. It’s hard having a child with extra needs. It’s hard when he fights me on everything [going potty, eating breakfast, wiping his face, getting dressed, going potty, sharing toys, not running into the street, not wanting to walk in the grass, wanting to eat leaves, riding in his car seat, not rubbing against the car, holding my hand in parking lots... You get the idea]. It’s hard to think of him needing something and being unable to express himself to someone trying to take care of other special needs children at the same time. And I know these are just mom worries. I know he’ll be fine. But it makes my heart hurt a little. And I might have started balling last week when a school bus drove down our street.

So that changed our “plans” for this year. We’ll continue to do Parents as Teachers with Cohen. We’ll have a pretty set schedule of taking Landon to school Monday through Thursday. And I’ve got big plans for Lucy.

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And she deserves it. The thing all of the wonderful support and intervention programs we’ve been a part of fail to help with is the sibling support. I asked her if she was jealous that Landon will go to a “real” school and she said, “No! I’m glad he’s going so that you and I can do big kid school and he won’t mess it up!” Ugh…

Last year we started the year doing a themed letter of the week concept for tot school. We got to ‘N’ and she said, “Mom, I know my letters, I like it better when we play games.” Well, okay then.

We had a few decisions to make regarding what level we wanted to start her at. Every kid is so different and learns so differently. So I’d say we’re starting out on a K4 level. She’s crazy smart but sometimes things look backwards to her and she’d rather spend her time playing  and imagining things. So I’m trying to pull something together that’s catered just to her. I have hopes that it will be heavy on the play-based learning, gentle on the standards-based skills, and light on the worksheets– you know all while being relatively inexpensive and not requiring too much of my time to plan or put together. No big deal…

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Shared Boys Room, [With Bunk Beds!]

I think I understand summer nearly as well as my friend Olaf. Or at least that’s what my husband will tell you when we return home from vacation each year with an IKEA haul. Instead of rest and relaxation, I like to use the extra set of hands to change up all the things that have been bugging me while he’s been chugging away at work all year. I’d like to think this summer he played a small part in the madness when we found ourselves comparing beds to move Landon up to a “big boy bed” and he said, “Why don’t we just buy bunk beds so we won’t have to do this again in a couple years.” I took a few minutes seconds to mull that over and jumped on board.

That might lead to the question: “Beth, Cohen is only 7 months old; why in the world did you buy him a twin-sized bed!?” But sweet baby Cohen is making out in the deal because we decided to make his stay in the playroom more permanent and took down the pack-and-play and set up a crib. I know tons of families in small spaces make it work with kiddos sharing spaces but it just hasn’t worked for us. So Cohen gets his own space in the playroom, which is conveniently located next to our bedroom, to make the middle-of-the-night feedings he can’t seem to give up a little closer.

And sorry if this is deja vu. We were totally talking about this eight months ago. Away we go:

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That’s the MYDAL bunk bed from IKEA. We slid Rubbermaid bus trays [made to bus tables at restaurants] under it to store toys and prevent toys from rolling under there as easily. And we layered a couple rugs… because that’s totally a thing people are doing now, right.

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More toy storage from some EXPEDITs.

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This crazy collection of toys would have driven me nuts before kids but now I love it because we just rotate out what they’re playing with the most and the easy access means less rummaging and dragging out everything they own.

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I made these paper mache letters from a cereal box and some masking tape, and then I covered it with maps and modge podge. So fun and so easy!

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That map has been attached to the wall from two and a half years with painter’s tape. So when I saw those adorable picture hangers from Young House Love at Target I got super pumped!

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Can’t leave out the kids current favorite! My mom bought this for Landon’s third birthday and everyone loves it! They are building non-stop. And Landon doesn’t even realize all that twisting and turning and banging is great for coordination and wrist strength so it’s a therapy win as well!

Parenting Is Glamourous*

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Manufacturers and retailers of baby items are to blame for the glamorous view I had of parenting in what is now affectionately referred to as the PK era. Before kids we went to the movie theater. I wandered aimlessly around Target. We stayed at our friends’ houses so late after dinner we’d just sleep over. And then we went on a Spring Break trip and came home with a baby in utero. We were beyond thrilled. We set up registries and had wonderful baby showers. I loved to kick back with the latest Babies ‘R Us catalog and dream the afternoon away. There are no tantrums in the Babies ‘R Us catalog. There is no sass in the Babies ‘R Us catalog. There are no mommies covered in poop. Did y’all know there would be this much poop? On you? But for all of the days you get poop rubbed onto your favorite teal colored skinny jeans, there are snuggles and kisses. There are sweet smiles and tender hearts. It doesn’t balance out because the scales tip so far into the “everything is awesome” range. [Lego movie? Anybody?]

So parenting is gross. And awesome. And sometimes you find yourself saying things that sound just like your parents. Or things you would’ve found so strange PK. Or things you hope the strangers walking by you don’t overhear [or do overhear if it's a couple teenagers in need of a reality-check].

But sometimes you’re trying to be a good parent. Provide for your child’s needs. And they just make you say the most ridiculous things. You know, like:

Okay, don’t lick me for real though.

Please get your hot dog off my leg.

No. You’re not a fascist, you’re the fastest.

No. Babies do not come out of breasts. Please stop touching me.

Share that piece of trash with your brother. He wants to look at it too.

*False. Parenting is not glamorous. But it is rewarding. It is challenging. And it is crazy beautiful and fulfilling.

Doll Fashion Girl

If you’ve met my daughter, you know she is super creative. Her thoughts, her drawings, her imaginative play– her creativity knows no bounds. When she asked Chuck and I if she could have a blog a few days ago we laughed and laughed. And then we got on board. We asked her what she wanted to name it and she said Doll Fashion Girl, which I imagine comes from the song she serenades us with that goes, “I’m a fashion Girl. I’m original.”

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Instead of using the artkive app like we have in the past, we decided we’d throw her creations up here. Her first portfolio. I love this kid.

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Let’s Be Serious

Where to begin?

How about a nice pie chart of my mental focus presently:

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[Forgive me, husband, for the utter and complete lack of scientific rationality in this "chart".]

I don’t think I could keep this up for long. My mind feels spaced out. And maxed out.

Some things I love and am thankful for- relationships and life. Ever-present and often redeeming.

Usually I like feeding the kids and creating fun lunches, but lately they want to eat constantly. Like every hour. Which leaves me in some constant flux of, “No you can’t eat; I just fed you.”, “Yes you can eat; what would you like?”, and “No you can’t eat; I haven’t even finished cleaning up from the last time you ate.”.

Some things are fleeting. I mean I know Cohen will eventually stop waking up at night and I won’t spend my days thinking about how tired I am. Potty training will eventually click for Landon. Right? Right!? I will eventually get everything packed for vacation.

The summer bucket list and compensating for focusing on Landon so much are related. As in, the bucket list was created in an effort to not get swallowed up by all of Landon’s present needs. To be intentional about having a memory-filled and family-focused summer. [I'll share our list soon.]

And then there’s Landon’s therapies.

Hm.

A long time ago I told you he qualified for our state’s early intervention program. When he was tested at 22-months-old he scored as a 9-month-old for his verbal communication skills and an 11-month-old for his adaptive behavior skills [which is sort of hard to briefly explain, but that's basically self-care and fitting into his environment]. We started speech therapy and soon added occupational therapy and they changed his life. Really. I am so thankful that I trusted my instincts to have him tested when people were telling me he was “just a boy” and he would “grow out of it”. He went from not having the trunk support to sit unassisted for more than three minutes to being able to climb and run and jump and… anything! He worked hard to gain strength and overcome low muscle tone. He is a champion! But speech-wise… He plateaued. Progress has been hard and very slow-going.

Our therapy coordinator made all the arrangements so we could begin the process of transferring his therapy to our school district when he will age-out of the early intervention program at 3-years-old. We had our yearly meeting, where we talked about the goals for Landon we set a year ago, and I couldn’t help but get excited about all the progress he’s made. So he’s not saying any spontaneous words, but he’s also not inappropriately touching strangers! I left the meeting feeling prepared for his eligibility evaluation with the school district.

The day of the evaluation came and [thankfully] it fell the week after school was out for the summer so Chuck watched the other two kids while Landon and I went to the meeting. I knew there were going to be a lot of people there because I’d been sent some paperwork which listed everyone’s role [This is the name of the speech therapist, this is the name of the school psychologist, etc.]. Inside the evaluation room, Landon and I were introduced to the six [SIX!] other people present.

Did I mention he was in underwear? I’m in the ‘ditch the diapers and don’t look back’ camp. Yeah…

Because Landon is amazing and one of the nicest, friendliest kids I’ve ever met, he wasn’t at all intimidated by all the new faces. He jumped right into playing with the puzzles, cars, and blocks with new “friends”.

And then every few minutes he would start holding himself and gesturing that he needed to go potty. We’d scurry down the hallway, out of the office, and into the public restroom where his eyes would widen taking in the stalls and his hands would cover his ears when someone turned on the faucet or flushed a toilet. [Public restrooms seen through the eyes of someone with sensory issues are downright hellish]. Overwhelmed by the whole experience, he would throw himself on the restroom floor [gross] in an effort to control his sensory input. I would then pick him up, dust him off, and walk him back to the evaluation room. [repeat x 15]

Eventually, two and a half hours [and one very big soak-the-shoes kind of potty accident] later, the evaluation was complete. The first thing one of the evaluators said was, “I know we’ve just met him, but I’m pretty sure we’re all already in love with your son.” Yeah, he definitely has that effect on people. We were then told he qualified for therapy related to communication, adaptive behavior, and social/emotional behavior [We assumed he would only qualify for his speech]. He was cited with having “sensory issues”. The speech therapist said she’s very confident he has both oral and verbal apraxia. He just barely scored in the “clinically significant” range for autism spectrum problems, which is the rank above “at risk” where he scored for attention issues [I feel compelled to add here that I genuinely don't believe my son has autism, but that he has some characteristics that autistic people also tend to have].

[In case I lost you at apraxia.]
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So kind of a big deal, right? And totally worthy of all that head-space and processing time. I’m trying to prepare for this meeting coming up in the next few days where we’ll decide how to get him therapy [Like: Should he go to a special preschool? Should we start paying for private speech therapy?]

But [and maybe this is crazy] my biggest take-away from reading the 14 page report I received about my son after the evaluation was:

My child has special needs.

I mean I’ve said that before. And it doesn’t change how I see him. But I usually minimize it by thinking, “There are so many kids with so many problems worse than this.” Maybe that’s doing my family a disservice. Maybe that’s dismissing the extra care everyone needs: Landon to receive extra help and patience and Lucy and Cohen to receive more intentional time. Sometimes just the thought of that is overwhelming. I’m scared there’s not enough of me. That as I give more of me, the quality given decreases. I can certainly see that to be true for my household duties. Nothing ever feels clean. Dinner always feels hasty.

How should I spend my time?

I had Lucy answer the questions for this Five Love Languages of Kids survey and, much to my surprise, her top love language was time. I thought for sure it was going to be receiving gifts because she never forgets who gives her things. I had to dig a little deeper and ask her what kind of time spent with me she was looking for. She doesn’t like shopping or running errands. What she wants is for me to sit on the floor and watch her play Barbies. She wants me to play board games with her [and let her cheat ;)] while the boys sleep. She wants to make cookies and brownies and cupcakes and layered cakes and pancakes and waffles. She wants me. A lot of me.

I pray a lot about not feeling guilt. Guilt that I don’t have time to give her. Guilt that I’m not spending extra time snuggling Cohen after I feed him. Guilt that I didn’t make Landon attempt to say the word of what he wanted for lunch after he brought it to me. Guilt that we didn’t do our ‘first words’ flash cards today. Guilt that Chuck gets my gizzards [unwanted extras if you weren't raised Southern ;)].

That’s where we’re at right now. If you’ve made it this far, I feel fairly certain you care for our family. Thank you. Seriously. From the bottom of my overflowing heart.

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