Awareness to Advocacy

Have you ever hesitated to share what you are struggling with to a friend because this statement rings in your head, “stop complaining, there are others who have it a lot worse?”

If so, I hope you know that yes, there are varying degrees of struggle out in the world, but that does not mean that your struggle is not real or does not matter.

When I first started to suspect that my child had special needs or was “more”, I shoved it down deep in my chest. I read books about discipline. I tried harder.

Maybe it was fear, or shame, or maybe it was some of those common statements so readily offered. You know the ones,

“He’s just a boy.”

“He’ll grow out of it.”

“You need to discipline your child more.”

“You need to be more consistent.”

Now, when I think back about what life was like when this particular son of mine was almost 3, I remember having a baby and a pre-schooler as well, but it took ALL OF ME to contain him.

I did not want to jump to diagnosis, but I knew that I needed help.

Growing up, I learned about special needs early. My mom was an Occupational Therapist. I have fond memories of stopping by her workplace as she had to drop something off, or pick something up. While she attended to her task, I would take in the environment around me.

On one hand it was one of the coolest places I had ever been. I couldn’t stop staring at all of the toys and equipment. I just wanted to play on everything-especially the swing!

But on the other hand, I often got introduced to kids who required a wheelchair, kids who could not talk, and kids who made lots of unfamiliar noises. Sometimes I felt scared about the unknown I was witnessing. Other times I felt sad. But often I felt amazed. The love and care that the therapists provided them, and the joy that the children expressed in their own special ways was incredible.

I feel grateful to have grown up witnessing this world of amazing people. The exposure to the reality of people living with special needs impacted me in so many ways.

This reality taught me at an early age to have perspective. To be mindful of the way I view things. Sometimes that means being grateful for what I have, when my flesh wants to complain. Sometimes that means, taking a step back to gain a better perspective, to see the big picture and to avoid rash or quick judgements.

But it also taught me that it is possible to be grateful and grieve.

It is possible, to know that there are worse things, but to still worry.

It is true that pain is relative.

Just because someone’s struggle looks different than yours, does not mean that yours isn’t real.

I understand that not all may agree with my way of thinking. But for me, if I had swallowed my concern, tried harder to be better and just kept focusing on the positive, I would have not served my child well.

Let’s be real. There is being positive and hopeful, and then there is “toxic positivity.”

For me, in order to care for my son well, I needed to swallow my pride. Some might think swallowing my pride would have looked like me ignoring the temptation to default to blaming my child’s behavior on a diagnosis and simply “manning up” and being more militant. I believed swallowing my pride truly was me accepting that no matter how hard I tried, I was not going to be able to manage this struggle alone.

Through humility, I was able to walk from awareness that my child might be “more,” towards acceptance and now into advocacy.

Our journey navigating have a child (2 in fact) with special needs started about 5-6 years ago. For those curious what it looked like practically, when he was 4 we reached out to Early Steps and found an OT that specialized in sensory integration therapy. We learned all about sensory processing disorder and we were encouraged to have a continued level of awareness if his needs were to shift or change for the better or worse. And they did.

Around age 6 he was diagnosed with ADHD and we found that it was time to navigate the use of medication to support his struggles and needs. A couple years later, after prayer and discernment, we felt it best to seek out a Neuropsychologist so that we could receive a more thorough evaluation in hopes of truly identifying what might be “driving his ship.” It was then that he was diagnosed with High functioning Autism.

Each year we have experienced intense heartache as well as intense celebration as we have watched him grow and learn, and make mistakes and make progress.

Just like him, we as parents are growing and learning and making mistakes and making progress.

We may have entered into the world of “labels” that so many fear. And I understand that.

But the only real label that we have in our house, is being “A child of God.”

That is the true identity that each of us holds and clings to.

The other labels have provided me with clarity and direction. They have blessed us by connecting us with the most amazing therapists and other parents walking similar journeys. All because of being aware of a great need that I could not fill on my own, accepting and embracing that reality and now being so much stronger for it that I can advocate well for my child.

So if you happen to feel like you need to keep your struggles to yourself, like you need to stuff them down or remember that others have it worse…. Don’t.

Remember, it IS possible to be grateful and grieve. I do it every day.

I grieve that I am a sinner. And that no matter how hard I try, I probably will continue to sin on this side of heaven. It’s not an excuse to sin, but it is a reality that without the help of the Holy Spirit, my flesh WILL fail. Yet at the same time I am SO grateful that because of what Jesus did on the cross, I am forgiven and made new and will get to experience an eternity in Heaven one day!

It is the awareness of my sin, and acceptance that lead me to MY ultimate advocate.

HE who-by the way, will NEVER judge you when you share your struggles with HIM. He will NEVER tell you try harder or to remember how good you have it. But HIS love will wash over you in such a way that you can’t help but be grateful, even in heartache.

Stay tuned for my next blog, I can’t wait to share about how every Mama needs someone who gets “it” and someone who “wants to.” Because every mama, regardless of if they have a child with special needs, is STILL A MAMA. Our struggles do not separate us. They draw us near to one another. And we all have a story to tell and hope to give.

 

 

The things we say

Sometimes you catch words coming out of your mouth that you truly never could have guessed would pass your lips. For example, “You can’t have your ice cream until you finish your McDonald’s.” Or, “You will go to the beach and you WILL have fun!” Unfortunately, those sentences were delivered more than once while we were living in India and traveling through Indonesia. Getting the kids to eat Indian food at first was quite the struggle. So when we would find a familiar food item or restaurant, out of exhaustion and in need of a minute of life without constant battle (Parents of young kids- I know you feel me,) we would give them what we assumed was EXACTLY what they would want, only to find that there was STILL something off. Like, the cheese was different on the pizza, and there was no McDonald’s cheeseburger, only chicken.

When we left India for a forced 3-month exit, we assumed travel was the best option versus returning to the US. After a month in Thailand, where we had spent most of the time swimming in a pool or at beach, by the time we brought the kids to a beach in Bali, they were “beached out.”

In the hotel room, asking if they could relax in bed and watch TV instead of the beach!

That sounds ridiculous, when I say it out loud. But in reflection I can understand. Going to the beach after leaving the summer season of India was like literal water to our thirsty souls. We were in desperate need of being outside, in the fresh air. So we overplayed the beach like you did when you were young and you put your favorite new song on replay. It was tempting to perceive our kids were simply being “spoiled” and “ungrateful” with their whining and resisting of fast food/ the sea and sand. But sometimes our perspective on what they would enjoy isn’t always spot on.

First Day in Thailand after leaving India.

I recall these stories because something happened the other day that brought them back to the forefront of my mind as if it was yesterday and not almost 3 years ago.

I found myself saying something that felt almost as foreign as it was crossing my lips, simply because it was my first time saying it.

“Wow. I am so thankful for the Cochlear aqua gear.” Try saying cochlear aqua gear 5 times fast.

I’ve realized that living in a foreign country sometimes parallels the way it feels when you are simply walking through a foreign aspect of your life (like being the parent of a child with cochlear implants). The unexpected challenges catch you by surprise. Just like the things you assumed would be tasty and fun, were not- The things you thought would be an easy, just aren’t.

When the weekend comes, we are often looking for activities that our family can do that check a few boxes. Is it outside? Is it active? Is it something that all 3 kids would enjoy? Checking all 3 boxes is not easy. But when we heard about the upcoming church picnic and kids color run, I think we registered faster than we read the event details. So when we packed up our picnic lunch and I was checking to see if there was anything I forgot….BAM! “Oh wait- what about his “ears?” (Note: We call his implants his “ears.”) I messaged his audiologist and she said he could still participate but to make sure to use his “aqua gear” to protect his implants from the residual powder that was to be thrown on him while running.

The aqua gear are incredible. They allow him to wear his implants in the pool! However, they make for a very clunky, gawdy experience for him and they do not stay put with his level of activity in a pool. They frustrate him and he often chooses to remove them and simply go without sound. Sometimes this makes my heart sad. I think because it reminds me, even though they are amazing, his implants did not repair his hearing loss. Although, sometimes I think it makes me more sad than he actually is. He has just as much fun with them off sometimes! Maybe it’s because he is an excellent lip reader. Maybe I project how I feel too quickly. Once again- assuming that fast food restaurants, beach trip and color runs are sure-fire wins, when they might actually not be.

Post-Color run. Thank God he wore the aqua gear to cover his implants!

Likewise, being the parent of a child on the Autism spectrum, sometimes it’s just simply a Saturday that catches you by surprise. Here you are thinking you will sleep in a little (because it’s the weekend, right?) and that your family might enjoy an outing and a day off of schedules. Instead you wake up to find it’s going to be one of those “off days”- the ones that remind you your child has some extra struggles. To enhance the struggle, these “off” days always seem to come the day after a couple days that felt “normal” and “functional”…“thriving” even. 

Garrett did NOT enjoy the powdered color!

But what’s my point?

Like always, I find solace in both rejoicing and lamenting, sharing my experiences with words and hopes of affirming not just myself but anyone else who might be reading this and longing for this kind of connection.

I bet all parents can relate to this thought, that a lot of days simply just do not turn out how you thought it would.

I remember back when we were newlyweds, dreaming about what values we wanted to instill in our children. Back when people asked how many kids we wanted to have and we would answer romantically, “five.”

And now….10 years later with 3 children, I can understand why those receiving our answer of “five” held the facial expressions and the muted responses that they did.

But just as important as it is to recognize the struggle and process those emotions so we can support one another better the next time around, the “great” days and moments need to be meditated on too.

Family walks….. 50% chance of success, am I right?

So on that note….the other night we were all sitting at the table eating dinner.

The end.

Just kidding! (Kind of.) Because to be honest, THAT sentence alone is a victory worth noting. 

Because getting 2 boys with sensory issues, ADHD and Hearing Loss to sit at a table and have a functional dinner time meal is like getting a fish to NOT flop when it’s first out of water.

But lately…… we’ve not only been sitting together….. and eating…but talking too! Talking in a group conversation type style! You know the kind- where people take turns, and finish each other’s sentences, and connect!

Just lately, we have seen it. And it’s priceless.

Some days, you are taken aback, because your 6-year old cochlear implant wearer just told you in full sentences, “Will you go wait in line for me and ask for a velociraptor balloon animal- but if she can’t make that- will you get a monkey?”

I remember when he only had 30 words total that he could say.

Some days, your 8-year old, chooses to give his balloon animal to his 6-year old brother. EVEN THOUGH he obsessed and fixated on getting one, spending the majority of his time at the picnic event worrying about getting one, and almost had a full-on episode when pulled out of line…..

A rare moment captured.

Some days you get to see your child grow. You get to see your child do something that was either SOO very difficult for them to do (but you know that they’ve worked hard on it in therapy) OR something you NEVER thought they’d be able to do! Because miracles DO happen, and walls DO come down and limits CAN BE surpassed.

And for the moms and dads out there who can relate- sometimes you get to encourage your own self because you have seen and felt that YOU TOO have experienced growth!

I remember the days when I worried if I would ever be able to NOT worry. I remember when my daily prayer was to not get mad or let my frustration with kids’ behaviors get the best of me. I remember when as a couple we grieved over if we would ever experience a social event where our family was functional, socially appropriate or without crisis. 

I still sift through all of these thoughts, but I am anchored by experiences of success, muscle memory, thicker skin and above all else, an unshakeable faith in my Sovereign God. My God who sees all of my days, all of my weaknesses, all of my efforts, all that I carry, and all that I hold dear. 

And because of that I GET to honor my son’s sacrifice of a ballon animal- even though there were a number of unfavorable behaviors that preceded…. 

I get to give myself a pat on the back when I chose patience and resisted the felt social expectations and judgements surrounding me and chose NOT to reprimand my kids, but instead walked them through a “do-over” so they could experience how things could have gone. So they could experience the possibilities of how life could be.

Because of God’s grace and mercy and the life experiences that HE has allowed me to endure, I understand better WHICH behaviors to place my mind and my heart on. I understand better how to handle the unexpected.

I am definitely, still flawed and dependent on Jesus and will be until Heaven. Thank God HE is with me every day until then. Because I know there will be many more moments of failed outings and wrong assumptions of what our children should think is fun and great and tasty.

But I look forward to more unexpected phrases like, “Thank God for the aqua gear.”

Mother’s Day.

It was the weekend before Mother’s Day in 2018. We went to Cocoa beach and had an incredible day. But as the day was ending and we were rinsing off the sand, the day took a turn.

To this day I can see what happened clearly, and at the same time, not clearly at all. The three kids were sitting at barstools overlooking the beach. They were passing snacks and being yelled at for trying to sit on the ledge. That is when Jackson fell off the pier. It was a fall close to 15 feet. He landed on his back on the sand. I can still feel the moment when his foot slipped out of my grip.

Fast forward to Mother’s Day one week later, I found myself sobbing in lobby of our church. I couldn’t stay through the entire service because I kept recalling the previous weekends scare. I was grieving over the events of Jackson’s fall. My heart squeezed as I recalled running down the pier ramp and onto the sand. I scooped him up into my arms, and we rushed him to the hospital. I cried that Mother’s Day because my mama’s heart hurt at the reality that one weekend earlier, my grip was not strong enough to hold him. By the grace of God, Jackson was not only OK, but completely uninjured.

Jackson today, May 2020.

I praise the Lord for his mercy that day. Even so, the painful memory still endures. And unfortunately, before Jackson’s fall, I was not a stranger to these feelings of pain and shame. I remember as clear as day when Gracelyn was 1 year old and 1 day, and I gave her peanut butter and jelly for the first time. I was so excited to share such a treasured treat and I looked forward to many PB&J days to come. That is, until the reality of her peanut allergy appeared.

I can remember her small one-year old body being strapped to an adult sized bed in the ambulance with EMT’s struggling to get an IV in her while I sang the only song I could think of to try to distract her, the “Happy Birthday” song. Hours later, following epipen and 2 steroid injections, she was recovered and we journeyed home with the trauma behind us and instructions for a new life ahead.

Sweet and strong Gracelyn, today, May 2020.

And I will never forget the day that Garrett’s school called us in, lead us down a hallway and had us stand outside a door to watch our son destroy a classroom. The beginnings of Sensory Processing Disorder, anxiety and ADHD could explain the long story, but the short of it is, a scared little boy was unable to process the big world around him and desperately needed physical touch to ground him. A hug, a squeeze, something. But the public schools have their hands tied and unless a child has a 504 or an IEP, the child is left to wrestle through their wiring and the world’s expectations of them. Once they let us in the room, I held him as tight as I could while Adam began deep pressure. As a result our son returned to us and broke free from the frantic that held him captive.

One-of-a-kind Garrett, today, May 2020.

Sometimes I wish I couldn’t recall these memories so clearly. I wish I couldn’t feel the pain and fear so intensely. Instead I long to meditate on the moments of thanksgiving and relief that follow. The moments when I rejoice because my children are still alive and safe in my arms. But anxiety will do that to you. Your brain gets stuck. And without intentional mindfulness, prayer and keeping your eyes on the Lord, the creator and sustainer of your faith, it is easy to fall prey to the pain and forget the victories.

Me, May 2020.

I guess, in that way, we are not so different from the Israelites. They witnessed protection through the plagues on Egypt. They witnessed being delivered. Yet, when they were in the desert, out of fear, they questioned ever leaving.

My children are only 8, 6 and 4 and I know there is more to come. I know that I am still young in motherhood. But I know that I am not alone in these experiences either. There are so many mothers out there with so many stories to tell. And by what I can gather, none of us are immune to the fears and insecurities that motherhood brings.

I look back on the past 8 years of motherhood with so many emotions. I pray with my entire being that I am doing right by them. I ask for the grace of Jesus to cover all my mistakes along the way. I beg him to finish the work He has begun in me so that I may fulfill all that is asked of me.

The Lord has blessed me with 3 children, 2 with very dominant personality types (and husband too!) I however, am wired the opposite. I have always struggled to find my voice in every setting of my life. Be it out of fear of confrontation, desire to keep the peace or just plain insecurity, I can honestly say it took me about 34 years to find my voice. And it was a messy road. Full of mistakes. Irony of it all, the Lord used motherhood to help me with that.

Today I can proudly say, I am the mother of an incredible, passionate, and dedicated daughter who will make an amazing actress one day. She is an expert at “not breaking character” when she becomes one. She is also the elder sibling of two boys with extra needs. We already have seen the impact of this on her life and so desire to stay vigilant in our awareness of her needs.

I am also the mother of a brilliant, witty, fire cracker boy who without a doubt is going to change the world- as long as I can keep him alive!! He may be wired with extra challenges, and he “extra” pushes my buttons, but we long to help him have access to all that he needs, to be all that God has planned for him. In these early years it is very challenging to discern when it is SPD, ADHD, ODD, anxiety, versus when it is just 6 year old boy. But God has placed us with the honor and challenge of identifying the difference, because there is a difference. Recognizing it and responding appropriately can change the course of his life.

And I am the mother of a precious 4 year old boy who has captured my heart and turned my world upside down. This boy was a God-given surprise that turned this scheduled, instruction following mama into a co-sleeping, wrap me around your finger type in the blink of an eye. And I think that was God’s plan because the way Jackson was designed does not fit into a type. Jackson has Usher’s Syndrome. His hearing loss, speech delay and future vision loss requires my ability to be flexible, innovative and full of grace.

I often wrestle with the temptation to ask God why he has chosen me for this family. I often feel so inadequate, weak, and discouraged. I struggle with the exhaustion from feeling like I am giving my all, my best, and not making a difference. Do you?

But I have to battle the temptation. For the sake of my children. And trust, that the Lord gave me these little ones for a reason. And that He does not expect me to be perfect. In fact, He knows I cannot. And, He knows that He can. For “He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” 2 Corinthians 12:9

And in His great mercy, he plants people in my life along the way, to demonstrate love, faith, courage and wisdom. He places others in our life to guide us and help us, like puzzle pieces working together to finish a masterpiece. I mean, it takes a village, right?

These truths enabled me to move our family of 5 overseas. And these truths allowed me to move us back.

And I will preach this to myself daily, if need be. Because God is worthy to be trusted. He is worthy to be praised. If He is worthy to take our sin upon the cross, sacrificing his life for us, then He is worthy to carry us through the life we live now. He is the one most worthy of our humility. Only then can HE extend His grace, so that we might taste the life He has set before us.

Malaysia

So we are not in Nepal! Not sure if you all caught that at the end of the last blog. We rerouted from Indonesia to Malaysia on November 11th. Our plans changed for several reasons.

Our last week in Indonesia was pretty tough. We were all travel exhausted and the effects of constant transition were taking its toll on our family. I was down for the count, knocked out by something that we thought was dengue. Two blood tests later and I still do not know what I had, but the kids caught a version of it as well.

Picture this:

Hottest week to record in history in Makasar, Indonesia. Constant fevers making it impossible to leave the air conditioned bedroom of the house that we were staying in, that just happened to be located directly next to a mosque who blasted the call to prayer over a megaphone 5 times a day.

Talk about being in a dark spot.

More significantly, Jackson had a noticeable decline in hearing again so we knew we needed to get his hearing tested sooner than waiting until we returned to Thailand in December.

So we booked flights to Kuala Lumpur, Malaysia and checked into an airbnb which later would become 1 of 5 Airbnb’s over the course of our stay in KL. Oh yea, before getting to KL we had already stayed in 9 hotel/houses in 2 months time.

We knew that we would be living nomadic for our 3 month forced exit from India, but we averaged a new place every 5 days. Can you feel my pain????

On the bright side, we knew we were making the right decision for our family and we had an ABR (sedated hearing test) scheduled for Jackson at Gleneagles Hospital 2 days after arrival.

Garrett, Gracelyn and myself also had checkups and walked away with 3 prescriptions each. How does Adam avoid this? I think someone needs to create a vaccine from his DNA.

We spent the first 4 days in KL returning to the hospital. Ill explain why in a bit.

But we also spent our time in Malaysia walking through Chinatown to the Pavillion Mall, taking grab cars to Suria KLCC mall and outdoor playground, visiting the Petrosains twin towers, eating donuts, visiting indoor playgrounds, going to the movies and seeing all of the christmas decorations up all over town.

Not sure if I am the only one who has noticed. But it seems everywhere we have gone around the world, marvel characters seem to be there!

Thanksgiving came during our time in Malaysia. At first I did not want to celebrate. Too many expectations to meet or let down during such a transient time. But we made some friends back in Indonesia that happened to be in KL and they invited us to join them! I never expected to celebrate Thanksgiving, and see Christmas decorations everywhere here in Malaysia, but I was grateful for both.

Well, as for the results of Jackson’s hearing test, little did we know our small re-route from Nepal to Malaysia would bring about a major re-route by the end of the month.

We had suspected a decline in jacksons hearing but we didn’t know how significant. Jackson’s hearing is now at a severe hearing loss level. This makes 4 declines total in his 4 years of life.

At this point we have been told that it is time to consider cochlear implants.

Back when Jackson first received his hearing aids we attended a support group for families of children with hearing loss. Many of the children in the group that were Jackson’s age already had cochlear implants. A representative from cochlear came and spoke to the group. I felt compelled to ask questions and take notes, as if this was an inevitable part of our future.

When we found out Jackson has Ushers Syndrome type 2, we were told to check his hearing every 3 months due to his rate of decline, even though ushers type 2 is not typical of progressive decline.

I just had a feeling we were headed this way.

With Ushers there is inevitable vision loss at varying degrees making it even more important to stabilize hearing.

So here we are now, almost 1 year since he received his hearing aids and we find ourselves spending the majority of our time scrolling websites about cochlear implants and discussing possibilities for surgery.

After considerable research and counsel from his audiologist in orlando, we know now that he is a candidate for cochlear implants, that he has maxed out his current hearing aid capability, that his hearing has declined roughly every 3-6 months and dropping and that the window for speech and language development is closing rapidly. Because of this, after great prayer we have decided it is time to return to the U.S and begin the process of pursuing cochlear implants.

Before we left for India we knew that he had hearing loss caused by Usher’s syndrome. At the time, we felt that we had everything we needed to care for him well even in india. We did not expect two declines in hearing while overseas.

It is clear now that we do not have all we need to care for him and our family unit well and thus we will be headed to upstate NY where my extended family is while we pursue cochlear implants for Jackson. During this time we will wait on the Lord to guide our next steps.

Being rerouted is hard. Having to wait is hard. Not understanding is hard. And trying to make sense of it all is exhausting.

Our journey has been one with setbacks and times of riding the wave, it has held changes in plans, open doors and closed ones.

Through it all we have tried to rest in the things we know to be true. The things true of ourselves, our needs, our abilities and limitations. Things we know to be true for the season we are in. And always the truth of who Jesus is and who we are as believers and followers of Christ. He is good, faithful and sovereign, no matter what. “He is our refuge and our strength, an ever present help in times of trouble.” Psalm 46:1

It is not our circumstances that makes this true, it’s the calm we experience in the presence of our circumstances. The calm that only comes from the Holy Spirit. The “peace that transcends all understanding.”

And with that, all we can do is the next right thing.

Yes, you heard me. I just quoted Anna from Frozen 2. But in all fairness, we saw the movie twice while here in KL and those songs are now engrained in my mind. And confess, I may have teared up during that scene.

So the next right thing for us looks like heading back to India, packing our bags and heading to the US.

Please pray for our family as we try to repack and transition once more.