Modern-Day Joshua Stones

I have a love-hate relationship with social media. On one hand, Instagram and Facebook can be time-suckers, relationship-killers, and potential breeding grounds for comparison and judgement. My mind and heart need limits and boundaries and down-time from screens and technology. But, one thing I do appreciate about social media is how it can serve as an online scrapbook of sorts. Posting on blogs, Facebook, or Instagram is a much easier way to document our days, our Big Moments, rather than ways of the past such as Creative Memories. Typing those two words, Creative Memories, makes me a little nauseous. Jesus, take the wheel. I can write words on the internet all day long, but please don’t ask me to cut zig-zag corners and strategically place stickers all around one big gigantic picture of my two-year-old licking her ice cream cone. The very thought of this task makes me want to cry a million tears (and would also take me 542 years to complete, so the odds are not in my favor.).  

I digress. 

Some of you know we have been praying, for years, for Clara, our oldest daughter with a rare genetic syndrome, to talk, and for her communication to develop and understanding to increase. Specifically, we have prayed for God to open Clara’s mouth and allow her to speak with words. He has answered this specific prayer twice, when Clara vocalized the words, “Hi,” and “No,” when prompted by her teacher at school. 

Well, a few weeks ago, God answered this prayer again. No, not by opening her mouth in our presence. But, through the form of increased awareness played out with the push of a few powerful buttons on her AAC device (Augmentative and alternative communication). So, we are marking the moment, friends, writing it down intentionally for the internet to read, as a permeant memorial so to speak.  Our very own modern-day Joshua stone. 

In Joshua 4:1-8 God commands the Israelites to cross the Jordan River (which He has stopped miraculously). To commemorate their crossing, God instructs Joshua to mark the moment by choosing 12 stones from the middle of the dried-up river. The Message translation of this portion of scripture describes the scene . . . 

4 ^1-3 When the whole nation was finally across, God spoke to Joshua: “Select twelve men from the people, a man from each tribe, and tell them, ‘From right here, the middle of the Jordan where the feet of the priests are standing firm, take twelve stones. Carry them across with you and set them down in the place where you camp tonight.’” ^4-7 Joshua called out the twelve men whom he selected from the People of Israel, one man from each tribe. Joshua directed them, “Cross to the middle of the Jordan and take your place in front of the Chest of God, your God. Each of you heft a stone to your shoulder, a stone for each of the tribes of the People of Israel, so you’ll have something later to mark the occasion. When your children ask you, ‘What are these stones to you?’ you’ll say, ‘The flow of the Jordan was stopped in front of the Chest of the Covenant of God as it crossed the Jordan—stopped in its tracks. These stones are a permanent memorial for the People of Israel.’”

An intentional, permanent memorial.

Back to Clara . . . 

I drove down highway 59 a few weeks ago and noticed she was acting a bit off for her usual drive-to-school self.  Her face pale, a little zoned out and well, just not typical Clara.  No fever (Why yes, I did put the car in park once securely stopped at a stoplight and reached waaaaaaay in the backseat to feel her head. I do not recommend this.). Going against that mama-gut feeling I dropped her off anyway, told her aide she seemed a little tired, and saw her out of the car. 

At 1:00pm I receive a call from Clara’s lead therapist. . . 

“Hi Brittnie. We wanted to let you know Clara isn’t herself today. She looks pale and has zoned out multiple times. She is just not acting normal. She was even spitting out her food at lunch and wouldn’t even touch her fruit.”

(Clara not scarfing down fruit is a red flag. We basically have to take out a loan to fund the strawberry and blackberry bill.)

Minus the food spitting, all the very things I noticed on the drive to school were now confirmed by her teacher. 

“I also wanted to let you know that when we gave her the iPad and asked, “What do you want?”, she pushed “I feel sad. I’m upset. I feel sick. I want to go home.” 

I’m sorry. I just fainted. What was that you said? She pushed all of those buttons, to express HER FEELINGS IN CONTEXT??? As in, on her own, on a day that you and I BOTH NOTICED PHYSICAL SIGNS OF ILLNESS? THIS HAS NEVER ONCE HAPPENED. NOT ONCE. 

“I feel like we need to positively reinforce her for vocalizing her feelings and needs. Would you like to come get her?”

Do I want to come get her? I. Am. On. My. Way. 

Friends, we pray and pray and pray some more for the things our hearts deeply desire. Sometimes God answers with a yes, a no, or a not yet. And sometimes, He answers yes with a twist. Sometimes, He answers yes in a way that forces us to intentionally look outside the box of ideal answers and praise Him for the sideways course His answer took. 

I don’t want to miss the twist, friends. I want my eyes and heart open to the ways He is working day in and day out, even if His works differ from my initial prayer lifted. 

And when He answers, regardless of the how, I want to intentionally mark it down. I want to intentionally set up stones of remembrance to say, “Look at what God did here!” I want to leave a trail of modern-day Joshua stones. I want to leave behind a stone-filled legacy so that my children and their children will always know that our God is good, and He is always moving on our behalf, and that sometimes His answers don’t come in the form of a straight line.  

Just please don’t ask me to do so via a larger than life scrapbook. 

. . . 

How do you remember God’s kindness? How do you document His answers for the generation behind you? What step of intentionality can you take today to tune-in to his “yesses with a twist?” 

. . . 

(This article was first written & published for my work with the CEO Forum Women's Ministry Monthly Newsletter.)

Joy Makes The World Go Round

Today I have the honor and privilege of sharing a guest post by Becky Beresford. I met Becky via an online bloggers platform and when chatting online about supporting other women's efforts, Becky and I decided to each share on each other's site this summer. Once I learned Becky also had a child with special needs, I knew it was a good fit. I asked Becky if she would share a bit about how she finds joy in the mist of parenting a child with different abilities. Be blessed by her words and then check out her website and social media platforms!

. . .

I’ve had a weird relationship with the word JOY, mainly because I haven’t understood its true meaning. 

When I became a mama, I felt guilty because I couldn’t see the beauty in every moment. I was tired and worn down, struggling with some hefty postpartum depression. The doors to my motherhood expectations were blown completely off their hinges the second we entered the hospital. After 28 hours of labor, my entrance into parenting involved an emergency c-section and a horrible recovery. I had to be reopened because of the infection in my incision, which was proceeded by allergic reactions to prescribed antibiotics and more. It was the absolute opposite of what I had planned. And so, Dear Reader, let me be real. Even though I was grateful for our precious little boy, if someone would have told me to “find joy” in the midst of so much pain, I probably would have shown them the door. I was that mad at God. I was that mad at myself.

It’s been 8 years since we’ve welcomed our David into this world. During this time we’ve had two more babies and miscarried a sweet third. With all the challenges and changes, my mind has had a decent amount of time to process joy within motherhood. But a major perspective shift happened when David was 2 years old. We were at his regular pediatric appointment when she told us David wasn’t developing as she liked. I remember catching my breath and then reminding myself to breathe. As hot tears started to form, I tried to fight off the panic. What was wrong? What did she mean? Would my boy be okay? The doctor clearly saw my impending freak out, so she assured me that he was healthy, but still she wanted him to get evaluated for sensory issues, including autism. The full weight of her sentence was felt. As I watched my beautiful boy tip-toe around the office, I knew this was going to be another unexpected entrance into motherhood. Except this time we were stepping into a new community. We were becoming a special needs family.

If you are a mama to a sweetheart with special needs, I just want to say I get it. We love our babies wholly and unconditionally. They are hand-picked gifts sent from Jesus, meant to change our lives and impact the world. But no one tells us how turbulent it is going to be. Nobody gives us a guide to the hard conversations or waves of emotions. I still struggle knowing how to parent my autistic son, whether I’m doing things right or screwing matters up completely. Every day he receives mixed messages, with his family on one side and society on the other. We tell him he is perfectly and wonderfully made. Society tells him he needs to change and adjust in order to “succeed” on their terms. He is told he needs to go to vast amounts of therapies, summer schools, diets, and appointments. Meanwhile, he sees his brothers and his friends living a life unlike his own. He knows he is different. He knows he struggles with “sensitive ears” and focus and anxiety and regulating his emotions. He sees the look on people’s faces when he has meltdowns at the department store and notices when the neighborhood kids stare. My boy understands far too well, and I find myself waging war between two realities… 

1.) He is loved just as he is by his family and God.

2.) The world will always tell him he is not enough… That he is “abnormal.” That he is flawed. 

And while each of us is imperfect, we are all perfectly made. God didn’t make a mistake when He made my son, just like He didn’t mess up when He made you or me. Everyone is unique on purpose. For our family, neurodiversity is celebrated because God is abundant in creativity and has crafted each of us specifically to reflect His own glorious image. Our bodies are different. Our minds our different. Our stories are different. Each individual is meant to highlight the character and heart of our great God in specific ways, and that’s a REALLY good thing!

These truths have become the steady undercurrent of JOY for our family. We have been blessed with the ability to see people in a holy light. By giving us our little boy, God has opened our eyes even more to the beauty of diversity… every tongue, every nation, every tribe. Every kind of people. In eternity we will experience the glorious coming together of all God’s children but raising our autistic son has helped us experience the joy found in this fusion NOW. We get to witness the power of the gospel for every soul because each one is precious to God. We get to tell our son, as well as others, that when the world says we are not enough, we can stand tall and declare our worth in Jesus because our identities rest firmly in Him. 

David will likely have a harder battle when it comes to accepting his value and security in God because society often desires to conform people to their standard of “normal.” But we want our son’s mind to be conformed to the thoughts and ways of his Savior. We want David, as well as our other sons, to know the joy of the LORD and all it entails. We want them to rely on God’s character and trust in His promises. He sits on the throne. He rules supreme. They can trust in His eternal reign and know that no matter what, they exist as beloved sons, joint heirs and triumphant warriors. We were ALL born to change the world, each person placing their permanent mark on the fabric of history. Being a special needs parent is hard, yes. But it is also a high honor. We are invited to partake in the sacred process of opening the world’s heart to the diversity of heaven. We have the privilege of ushering in the fullness of our extraordinary God. This is our unexpected journey. This is our treasured joy. 

May we bring His loving kingdom down. 

On earth as it is in heaven.

. . . 

Becky lives in Huntley, IL and is happily outnumbered by her husband and their three wild boys. She thanks Jesus for coffee daily. She is a writer, dreamer, certified life coach and speaker with a Master’s Certificate in Discipleship from Moody Theological Seminary. Becky loves encouraging God’s Daughters to embrace their precious worth and live life fully loved. When she isn’t at the keyboard, you can find her dreaming of warm beaches and hanging with her people. She would love to connect with you online at www.BeckyBeresford.com, as well as Facebook @www.facebook.com/beckyberesfordauthor and Instagram @www.instagram.com/becky.beresford

If We Would Just Stop Fighting Long Enough to Look Up

It's that time of year when many of Clara's ongoing doctor appointments show up on our calendar.  Every June and December we are faced with those twice a year appointments that are B.R.U.T.A.L. Completely necessary, but horribly emotional for everyone.

Last week week, the eye doctor, and this week, the dentist.

Just hold me.

Last Tuesday's eye exam started off well. Clara was cooperating and generally tolerating the wires that hung from her head. But after thirty minutes of arms restrained while various lenses are being held up to her eyes, she started to fight.

And after that first test came the dilation for her retina check and not only did the fighting continue, it increased in intensity. Imagine three adults tag-teaming a 55 pound six-year-old to get the job done. Brandon laying over her restraining her legs and arms. Her head being held firmly and tightly, by me, to keep her from continually banging her head against the floor. And the doctor prying her eyes open as wide as possible to get the best look at the state of her retina.

Sweet Camille was there ("I just want to be with you and sister and daddy today.") instead of school and at one point tears filled her eyes and she quietly and appropriately excused herself from the room to sit in the hallway, Brandon and I looking at each other knowing a debriefing was in our future.

In the car on the way home my conversation with Camille went something like this . . .

"I know that was hard to see, wasn't it, Camille?"

"Yes, mommy."

"How did it make you feel watching Clara get so upset?"

"It made me sad and scared."

"Is that why you left the room to wait in the hallway?"

"Yes, mommy, I just wanted it to be over and for Clara to smile again."

Melt me.

"I want you to know it's hard for mommy and daddy, too, sweetie. We absolutely hate having to put Clara through these appointments. It's tricky, because there is no logical way to explain to her what we are trying to do."

"Because God made her different?"

"Yes, exactly, sweetie. When you go to the doctor we talk about it beforehand, you understand what will happen and can cooperate with the doctor, even if you're scared. With Clara, while we do tell her beforehand what is going to happen, her brain doesn't process like yours, and so she fights us as a way to protect herself. She fights us because she is scared and thinks we are trying to hurt her. But you understand that we would never, ever, do anything at these appointments that would hurt sister, right? What the doctor was trying to do doesn't actually hurt at all."

"I wish she would just relax, mommy, to know that you are just trying to take care of her."

Out of the mouths of babes, you guys, because it hit me.

This is exactly how we, in our humanness, relate to God at times. We keep fighting, fighting, fighting, banging our head and throwing our fists in His face because we don't understand what in the world He could possibly be doing in our lives. We fight, instead of relaxing in the arms of the one who cares for us day in and day out. We fight and throw tantrums because the lack of control feels scary, instead of pausing long enough to look in His eyes and realize He is just trying to take care of us.

Friends, everything He is doing, even when it doesn't make sense, is really for our good and protection. All of it.

It's the fighting that intensifies the stress of our circumstances.

Life is hard for all of us, in unique ways, so please don't think I am over-simplifying this response.

But, we have a choice.

We can choose to fight because our brains literally can't make sense of our circumstances, or we can choose to rest in faith and trust and the overarching hope that He who began a good work in us will carry it through to completion." (Philippians 1:6)

We can choose like those who came before us to "perservere because we see him who is invisible." (Hebrews 11:27)

So . . . Let's take the advice of a wise four-year-old and relax and notice all the ways our Father is taking care of us.

And let's all just say a prayer Clara can do a bit more relaxing this Thursday at the dentist. :)

Clara's latest EEG Results and Update

Cutest girl in the world! 

Clara had her second EEG done in early April of this year. Her first was done at just over one year old.  The reason's for ordering this test is too much to get into here, but basically we have been working toward securing state services for Clara and have been going through the beast of a process of getting denied because she is not deemed "severe enough" - requesting an appeal for a fair hearing - completing two fair hearings - gathering letters of support from all of Clara's medical professionals to speak to our need for services - etc. It's been a blast!

Or the exact opposite of a blast. 

Anyways, I asked our neurologist (who we had not seen in several years) for a letter of support for our case and in order to get said letter we had to make an appointment (since he had not seen Clara in such a long time). After updating him on Clara's latest milestones and ongoing goals, I mentioned Clara spaces out from time to time, he wanted to rule out any seizure activity, so he ordered an EEG. 

He also ordered a sleep study as she wakes nightly for one to two hours. 

We received the results last week. Her EEG came back "sufficiently abnormal." This type of seizure activity is suspected and she will have a 24 hour EEG sometime in the near future to get a better idea of what is going on. If needed, she will be treated with medication to help control the episodes. 

Her sleep study results came back normal. Apparently she just likes to party at night! Disrupted sleep is common in kids with neurological differences/special needs, which we knew, so thankfully there is not more going on there. 

The neurologist explained that sleep deprivation lowers your threshold for seizures plus effects developmental abilities, so a non-habit forming sleep medicine for bedtime was prescribed.  

Clara on her 6th birthday! Took her to the mall to ride the carousel, her favorite! 

I had a hard few days after learning of these results. For some reason the word seizure just made me feel sad. I was honestly probably more in shock that anything, since I was not expecting these results, but I am doing much better now!

The good news: The neurologist, along with Clara's pediatrician and eye doctor, all agreed that they have seen many kids who were having these a-typical absent seizures get on medicine and then experience a boost in development. All three professionals said this is good news. Now that we know what is (most likely) happening we can take steps necessary to help Clara progress in all areas of development. This is a huge blessing!

God works in mysterious ways, friends. If we had been approved for the state services initially we would have never pursued letters of support from Clara's doctors. Thus, we would have never made an appointment with her neurologist and he never would have ordered the EEG.

Please pray for Clara (and us) as we get ready for this test. 24 hours is no joke. She put up a fight for the 1.5 hour test, so ya know (smile). Thankfully we have a prescription medicine that should help calm her (for a time) but 24 hours is a whole new ballgame.

Thank you for the prayers and support!

Special Needs Potty Training . . . Take Two . . . Four Months In

Some of you know we started potty training Clara at the end of October of 2017. This is the second go-round with potty training. 

Love her smile here!

#justholdme

Our first attempt started okay, yet ended with us never fully taking away her pull-ups, which resulted in us slacking on her sit schedule, which basically confused the daylights out of Clara, which is not ideal for a child who is significantly delayed in development. Consistency is um, key. I could fill these lines with lots of excuses as to why we never fully went for it (language barrier being the main excuse) but honestly, I just wasn't ready to go all in and give it 100%. 

Toward the end of last year Clara's BCBA (Board Certified Behavior Analyst, think lead therapist that is in charge of her targets and treatment plan at school) encouraged us to try again and this time go all in. As in, follow their protocol 100%. As in, take away the pull-up from day one and no going back. Our BCBA thought she was ready and since it was the start of "a new school year," (she goes year round but this decision came in the fall of the school year) he encouraged us to truly give it our all. 

I am not exaggerating when I say I cried for a solid 24 hours leading up to day one. Brandon thought his wife had gone off the deep end. Bless his heart for not giving up on me. 

Initially the protocol was intense (see below). And by intense I mean we were literally living in the restroom. This protocol was happening 24/7 (unless sleeping at night), both at school and at home. 

• Every two minutes prompt to drink.
• Every five minutes conduct a dry check. If dry give verbal praise.
• Every thirty minutes - 10 minutes on the potty, 20 minutes off
• Play iPad is reserved for successful voids on the toilet only. If she has a success she gets the iPad for 5 minutes, then it goes away. She is not allowed access to the iPad at all unless a success. This will help pair her most reinforcing item with voiding on the potty. I pee on the potty, I get iPad.
• If she has an accident, we say "No wet pants," and take her immediately/swiftly to the toilet to sit and help clean herself up.

Those first few weeks were messy to say the least. Like REALLY messy. Yet, approximately two weeks in, she started initiating! I was honestly shocked she picked it up so quickly. Once she started initiating, we were told to drop the sit schedule (all the praise hands!), yet still prompt her to drink every two minutes and dry check her every five minutes. 

Once she achieved 20 straight successes with no accidents, (only referencing urine here, was told BM's will come later, so when I reference an accident I'm referencing pee) we stopped pushing fluids. She conquered this in December 2017.  

The next goal, and where we have been since December of last year, is one month of initiations with no accidents. Once she makes it one month accident free, we can teach her to mand/request for restroom using her iPad/speech device (she has a separate iPad for communication).

Our BCBA is confident in this requirement/goal of one month accident free, and it is based in the latest ABA (applied behavioral analysis, the type of therapy Clara receives at school) research for children who are delayed in development/Autistic. 

The longest she has made it is three weeks accident free. Again, just talking pee here, she still poops her pants daily (smile). I keep reminding myself that three weeks is remarkable! Truly incredible! But honestly, it is disappointing and frustrating when you think you're almost there and then boom, accident. Data is wiped clean and you start over, again. 

Lately, we have seen regression on the weekends, for whatever reason. We are investigating this to see what triggers might be occurring and how to help eliminate them. The past few weeks she has had accidents during the week, as well. Two last night. Sigh. I know she will get there. I know she will. 

We have been limiting her outings because 1. she is required to initiate and 2. she does so by walking to the restroom and 3. we are this far in and thus determined to not deviate from the protocol. So as you can imagine, asking her to initiate when out and about in the community can get tricky when she doesn't know where the restroom is located. So we are homebound a lot. Which is okay. I know this is just a phase and it WILL be worth it in the end. Just got to keep pressing in and pressing on. 

Once we can teach her to request restroom on her iPad, her world (and ours!) will really open up again and we can do more things as a family of four etc. 

Thank you for the encouragement, texts, phone calls and random check-ins over the past few months. We feel loved and supported and are beyond grateful for those that rally around us in times like this where raising a child with special needs feels a bit, well, tiring. 

Loving her new glasses!

(Eyes must be on her all the times, as we have to see when she walks into the restroom. This can be challenging when multiple children have conflicting needs both physical and emotional. We have tried putting a sensor in the restroom to alert us when it senses motion, but every one we've tried is WAY too loud and scares the daylights out of her.) 

Will you pray with us that God will open our eyes to any triggers that might be causing the regression? Will you pray that we won't grow weary in his process and will continue to give it our best? Will you pray that Clara makes it one month accident free?

Thank you, thank you, thank you! 

Praying the next update involves Clara requesting potty on her iPad/speech device!

***There's been a few times I/we have missed Clara walking into the restroom and found her minutes later on the toilet just sitting there waiting for us. Cutest ever! A few times her pants have been drenched, but we were so proud because she did what she was supposed to do! She felt the urge,  held it, walked to the restroom, got on the toilet, and urinated. She can't pull her pants/underwear down unassisted, thus why she was soaked. Once she did the same thing and then even got off (guess we were really distracted, usually happens around dinnertime) and flushed the toilet! We ran in to find her grinning from ear to ear!! Her pants were soaked but man, what a gift from God to get this glimpse into what she CAN do and the confirmation to just keep at it.***

Louder Than Words (The night my non-verbal daughter told me what's up)

Clara's bedtime routine goes down the exact same way, every single night. This is important as kids like Clara learn differently and it takes years of repetition and exactness for something to stick and become, well, routine.

Even down to the words we use. Simple, one or two word/step instructions.

Clara's bedtime routine looks like this . . . (She needs assistance with all of it, but we do make her "help" with each step.)

Brandon sits Clara on potty. ("Go potty." "Flush." "Wash.")

Brandon brushes her teeth. ("Open." "Top." "Bottom." Open." etc)

Clara turns off the water. ("Water off.")

Clara turns off the bathroom light. ("Light off.")

Turning off the bathroom light is Clara's que that it's time for bed. While Brandon has been handling the hygiene, I've been preparing her room for sleep (sound machine on, toys out, lights out, etc).

It only takes me a few seconds and typically I'm waiting in her room to rock her. She only prefers me to rock, and I'm not complaining one bit. If she gets to her room after turning off the light and I'm not there, she will whine and wait. Really, it's the sweetest time. To cradle your 5.5 year old "baby" in your arms while she drifts off to sleep is just, well, priceless. She doesn't fall asleep every night, but many nights she's so tired from the long school day that her eyes close within minutes.

One particular night I was rocking Clara and Camille asked if we could read her bedtime story in Clara's room instead of her room.

Brandon began to read to Camille, both lying on Clara's bed, while I rock Clara on the other side of the room.

Three or four pages in Clara shot up, walked straight over to the bed, and attempted to grab the book from Brandon's hands.

Initially, we attempted to redirect her. "No, Clara, it's time to rock. You can't just grab the book from someone's hands." etc. This went on for about a minute and then it hit me.

"Wait. She might be telling us something. Let's give her the book and see what she does."

So we did.

Brandon released the book. Clara held it tightly and walked back to me in the rocking chair. She very deliberately handed me the book and turned around to climb back in my lap.

"Clara! You want to read, too? You want to read tonight??"

She signed please.

I about lost my mind.

So Camille crawled in my lap, too, and the three of us girls enjoyed one of the sweetest moments I can remember.

I love Clara's smile in this one . . .

It's as if her smile is saying, "Thank you, mommy, for listening to me."

This incident was such a good reminder for me to listen well, to be slow to assume, and to read between the lines, because things are not always as they appear.

Clara was not trying to disrupt the bedtime reading.

She was trying to be included in the bedtime reading.

Sometimes, actions really are louder than words.

Even in trust, there's triggers

We are blessed that in this massive city of Houston, there's one other family parenting a child with Cohen Syndrome. A family that has a daughter just three months older than Clara.

Ironic?

Or maybe a God thing. :)

After many recent attempts and cancelations due to sick kiddos and the like, we finally were able to collide our calendars for a dinner get-together.

It was so good for my mama soul.

Because as much as my family and friends support and cheer on and stand beside, unless one is living the day-to-day life of a child with special needs, the ability to fully understand and relate is just hard. And honestly? It's comforting to know that someone else understands every. single. bit and is able to say "Oh goodness, my girl does that too," or "Us too!" or "What do you do about x, y, or z?"

This get-together came at the perfect time for me. The perfect time meaning the start of the school year. The school year when my sweet girl should be entering Kindergarten, but instead she remains in the same class that she entered 2.5 years ago at a school for children with special needs.

I'm fully trusting and confident in our school choices for Clara. It is where she needs to be, no doubt. And I'm fully trusting of God's overall plan for her life. One thousand percent.

Even in trust, there's triggers. 

After a long, hard meeting yesterday with Clara's BCBA, regarding a new plan for potty training (please just pray) and potentially transitioning her to a communication device/iPad app from her PECS book, I stupidly opened Facebook.

You would think I would have known better.

Picture after picture of children on their first day of school, kids starting Kindergarten, etc. etc. etc.

And I broke down in tears because here I am discussing programming for how to teach my five year old to void on the toilet, how to help her best communicate, and agreeing with her lead therapist that no, she is not ready for a less restrictive environment, all the while moms of typical kids are distressed because another school year is starting.

In 100% vulnerability I wanted to scream, "Do you not get what a blessing this is, your kids going off to school? Your kids are starting at a typical school with typical teachers in a class full of typical peers sitting in a typical lunchroom and playing typically at recess and will continue this year, all year, to learn all typical, age-appropriate, educational targets, and you are crying?"

All the while I'm crying because who knows if my child will get that experience.

All the while I'm crying because we are working on skills we've been working on for years. Skills like "Pat the table," pointing to objects, "Wipe your face," "Show me your eye," "Walk with me," "Look at me, Clara," and other targets such as completing a 3-4 piece puzzle, responding to her name, drawing a straight line, stringing a bead, using a fork and spoon, and the like.

I'm crying because while I fully trust, life around me continues and will continue to be a reminder of how different life feels for our family at times.

Through the tears the Holy Spirit convicted, as He always does, ever so gently.

Just because you're dealing with a certain level of hard doesn't mean the people around you, other moms, aren't entitled to their own level of hard. Hard is hard and looks different for all of us. Feelings are feelings and regardless of circumstance, feelings are real for all of us. 

#ouch

#shameonme

All the while I sit crying about my child's lack of milestones and delayed entrance into the world of typical school, another woman is crying because she so desperately wants a child to call her own and is waiting, childless, and looking at my life probably wanting to scream, "Do you not get what a blessing this is, the fact that you have a child at all?"

#perspective

There will always be our hard and another's harder.

I asked for a little bit a lot of forgiveness, wiped my eyes, shut down Facebook and instead pulled up the pictures from our dinner date. The tears soon replaced with a smile.

These two are so stinking cute. Seriously.
Their mannerisms and facial expressions and habits are identical. Cutest kids I ever did see. 

When I look at these pictures I see love, joy, peace, and an abundance of happiness. Four qualities that most all of children with Cohen Syndrome possess. Four qualities that at their core, are more important than any typical educational milestone.

One of the symptoms of Cohen Syndrome is, and I quote from our paperwork, "a cheerful disposition." Pretty amazing, right?

What a gift.

I've heard that when parenting a child with special needs one must be on their guard against these types of triggers (as in, don't open Facebook on what would have been a milestone day), and that it's completely likely these triggers will come and go throughout our lifetime because there will always be our reality vs. another's reality.

Even in trust, there's triggers. 

But trust is what keeps me moving forward, head held high, regardless of circumstance.

Trust is what helps me wipe our eyes, smile with contentment and feel utter gratitude for the gifts God allows my friends to experience.

For the gifts He allows me to experience.

Brandon texted me this picture the other day.
I replied, "Cookies in bed?"
To which he replied, "She asked for them."
Haha, love them!

Sleeping angel 

To my daughter who (frequently) gets the short end of the stick

Dear Camille,

It's been a while since I've taken the time to write a letter to you. As I was observing your behavior today, during one of Clara's many therapy sessions, I knew it was time.

I know it isn't easy being you, a typical sibling to a sister with special needs. Your life is a blessed one, no doubt, but I will admit you frequently get the short end of the stick.

Ever since your birth your life has revolved around Clara's needs, appointments, therapy sessions, treatment plans, and medical follow-ups. Clara's first speech therapy session was on your two-week birthday. You've been tagging along strong ever since. And I have never once heard you complain. Not once. You have grown to know our routine, how important Clara's therapy appointments are to her overall growth and development, and it has become part of your normal. You will never know what a blessing this is to me as the mommy of two beautiful, but vastly different girls.

What started as three-four private therapy sessions a week a few years ago has morphed into two private weekly sessions mixed with various meetings and consultations/trainings at your sister's school. By hopping in the car with a smile every Monday and Wednesday to take Clara to speech, and then immediately following those appointments, heading into another meeting with me at Clara's school after drop-off, you are giving me a precious gift. I can breathe easy knowing that our routine won't cause a struggle, a fight. You skip right into Ms. Missy's office and ask if you can color or read a book while Clara does her thing. And you go with the flow and ask if we can swing on the playground after talking with Ms. Jovan. Of course we can color and swing, sweet girl.

Sometimes I feel guilty that you get dragged around from appointment to appointment, missing out on other opportunities, so I do try to make up for that with special one-on-one moments. Like today when we made cookies together, you in your swim suit, just because. I try to make our days, in-between therapy sessions, count.

It's easy for mommy to fall into the trap of expecting you to act like the older sibling. The dynamic around here gets a bit tricky for mommy, but that doesn't mean I should treat you like the five your old your sister isn't.

You, in many ways, function as the oldest sibling. You can do for more yourself, are more independent, can communicate and follow instructions. You can get dressed and put on your shoes all by yourself. You can throw away your trash and wash your hands. Sometimes I take advantage of all you can do, expecting you to do more and more and more, and that isn't fair.

Clara drops her sippy cup on the floor and I insist you pick it up. I spot Clara chewing on her glasses in the next room and I insist you run in there and take them away. You are the sister, not the mommy, and sometimes I default to requiring more of you than I should.

I find myself saying frequently, "Camille, please clean up your crayons," or "Camille, you know you can't leave your dress-up beads on the floor," or "Camille, you can't leave your open water cup on the edge of the table," as your sister loves to chew on inedible objects and doesn't understand the concept of an item spilling and making a mess.

I wish I could let you leave your blocks and dress-up jewelry out all over your bedroom floor and your bike in the middle of the hallway, but unfortunately, I have to take your sister's needs into consideration constantly. Mommy is always anticipating Clara's next move and need and sometimes that results in my barking orders at you. Mommy is sorry and I am truly working to correct this behavior.

I love you so much, Camille. You are an amazing sibling and compliment your sister perfectly. You are highly in-tune to Clara's needs, you have her back, and you always cheer her on in her goals.

I love watching you interact with Clara. You give her so much of your time and attention, with very little response, yet you keep giving. You never give up, Camille. What a beautiful quality. You throw out "I love you's," and kiss Clara goodnight and ask her questions as if she is going to answer back with actual words. You ask her teacher excitedly every day at pick up, "Did she go potty today?!" What a gift this is to Clara. Keep it up, sweet girl. You are showing the world that a child with special needs isn't scary or weird, just different, and that a lack of response or eye contact is no reason to avoid interaction or dismiss an opportunity for connection.

Proud doesn't even begin to describe how I feel towards you, Camille. I know you get the short end of the stick sometimes, well . . . a lot of times, but I hope you know you mean just as much to me and play just as important of a role in our little, perfectly-imperfect family.

Love,
Mommy

Baby steps are still steps

Clara has been at a children's center for Autism, receiving six hours of ABA therapy a day, for nearly two and a half years. And while we have seen amazing progress in her overall abilities and development, and work continually at home to help reinforce what she is working on during the week, I'd be lying if I said I never assumed there were certain skills she would never master.

I am biased, obviously, but is she not the cutest kid ever?

Like identifying letters.

Identifying shapes.

Identifying colors.

You get the idea. These are skills Clara's three year old sister has mastered, and maybe it's a means of heart protection, but sometimes my expectations are lowered for my special needs child.

Because when you are parenting a child who has never spoken a word, doesn't typically respond to their name or other basic questions/directives, it is really easy to assume they don't get it. Aren't getting it. Or won't ever get it.

It's easy to assume stuff isn't sticking when the output looks so different than that of a typical child.

But time and time again I am reminded that little-by-little progress adds up.

Baby steps, while small, are still steps in the right direction.

Baby steps are still steps. 

Some of our baby steps along the way. Lots of OT sessions, typically three a week. 

Remember her itty bitty purple hand braces? We had to teach her how to separate her thumbs from pointers (it's as if they were glued together) and these, over time, did the trick. 

I have only five years of special needs parenting under my belt, and a whole bunch more to learn, but if there is one overarching piece of encouragement I can give to a mama who is overwhelmed by their child's lack of abilities or milestone gap that seems to continually widen, it's this. . .

Keep showing up.

Keep pushing your child toward their next target.

Keep working their treatment plan day after day after long day.

Keep assuming that one day, someday, that thing they struggle so hard with will click. That the lightbulb will go off.

Because eventually, maybe two and a half years later, much longer than expected and long after deeming a goal no longer attainable, your kid will knock your socks off.

They will show up, as they do every day, and blow your mind with a new skill.

Like Clara did this past Friday during my parent training.

(One of the videos won't upload due to length, but in it she correctly points to the letters S, R, D, A, L, and O. You can check it out on Facebook.)

I've watched these clips approximately 200 times. It never gets old.

One thing I love about the special needs journey is it creates this sense of complete awe and appreciation for even the tiniest of skills. Every little milestone possible is celebrated. Learning how to grasp a crayon. Learning how to grasp two objects, one in each hand, at the same time. Learning how to use one's eyes to scan for a certain object. Learning how to take a bite of a piece of food, such as a banana or sandwich. Learning how to walk around objects on the floor instead of tumbling over them. Learning how to point. These are all things I don't know I would appreciate as much if they didn't come so hard for my oldest girl.

So, needless to say, the past few days have been filled with gratitude, delight, and celebration.

And after the celebration dies down and the newness of this accomplishment fades a bit?

We will keep showing up with eager expectation, assuming that the next goal, whatever it may be, is well within this precious girl's reach.

(To learn more about our daughter's diagnosis and journey, click here.)