Autism Spectrum Disorder – Motherhood & Mindfulness

Hello Struggle, we meet again.

“Leave no stone unturned in your effort to support the needs of your children. Do whatever it takes to thrive and not just survive.”

I received these words of wisdom 3 years ago almost to the day.

I received these words about 15 months after our family had left everything behind and moved to India.

Embraced these words roughly 6 months after we abruptly aborted our overseas relocation to return to the US so our youngest child could receive cochlear implants. 3 months prior to hearing these words, the pandemic began.

I gripped these words like a boxer in the last round of a fight, after having water squirted down my throat in the midst of a final pep talk.

I needed water, encouragement and I needed it to be the “last” round.

Dramatic? A bit Much?

That’s OK if you think so. For me – no description could be more accurate.

Before receiving those words, I felt like a mom who was at the complete mercy of the world. That no matter what I did, or how hard I tried – I would never meet the needs of my children.

We returned to the US to get our son the reliable sound he needed in the wake of progressive hearing loss caused by Usher’s Syndrome.

We returned to the US, but not to our home. We bypassed our home in Florida to move in with my parents home so we could surround our family with an abundance of support. It was not just our youngest that had incredible needs to fill. Our middle child had just started taking medication for ADHD and was also struggling with undiagnosed Anxiety and Autism Spectrum Disorder. My husband, daughter and I were exhausted from the intense disregulation and unpredictable behaviors often associated with special needs. So with all of that AND with embarking upon something as involved as cochlear implant surgery…. well – this mama just needed her mama.

I am so grateful for the support and hospitality of my parents during that season. So much love and healing surrounded us in that time. However, the reality was that our lives just got turned upside down, 3 months prior to the beginning of the COVID-19 pandemic with NO foreseeable access to cochlear implants.

So AFTER receiving those words of wisdom – “Leave no stone unturned in your effort to support the needs of your children and do whatever it takes to thrive and not just survive,” I felt EMPOWERED.

I was so tired of feeling helpless and despairing. I was delivered a call to action that I did not know I was hungry for or even capable of pursuing. Those words triggered a movement inside me.

We relocated back to the home we left when we moved overseas. Within 2 months of moving back, our youngest was in a therapeutic school for children with hearing loss and received his first cochlear implant. Our other two children were enrolled in school, extracurricular activities and reuniting with friends. Our middle son started receiving therapy and support from specialists to help manage and navigate his evolving needs as well.

And the drive to provide only grew from there.

The following school year we found a private Christian School located in close proximity to our youngest son’s therapeutic school. That way drop off and pick up were much more manageable. Because leaving no stone unturned so that our family can thrive involves making mom’s life more supported and more manageable too.

We applied for scholarships for the kids schooling, grants for their medical bills, underwent special insurance screenings and completed endless amounts of paperwork. We received nominations from special needs organizations, and anonymous gifts from watching friends and family all in the effort to help our family thrive.

And they started to. We all did.

Just because we were back in America did not make it seemless, trust me it was messy. It required a lot of trial and error. BUT….. there was a shift!

Jackson could hear. And talk. And understand. He had the best care team ever. From audiology, to vision, Speech, Listening and Spoken language, OT and Pre-K.

Garrett was making it through 3rd grade! It was touch and go at times behaviorally, but academics were a breeze. He was competing in recreational sports, supported immensely in a social skills group and feeling a sense of positive self-worth.

Our daughter was excelling in gymnastics and experiencing the most consistent form of schooling in years (having rotated between homeschool overseas, public school and “pandemic” school.)

My husband was making a positive impact at work and I was experiencing significant life-change in several areas of my personal development and growth. Areas that had been dormant for so long, such as in fitness and nutrition, employment (after a decade of being a stay at home mom) and other areas such as writing, coaching and public speaking.

I can’t believe I received those words of wisdom 3 years ago, almost to the day.

With all the life I just reviewed, it’s hard to confess that these past few months I have been struggling. Life somehow has felt almost as hard as those months living in a foreign country with 3 young children, 2 with unmet special needs.

My blog is meant to be a place where others can feel connection and encouragement. Where other moms like me might feel understood, known and seen. I strive to write from personal experiences laced with faith and belief that God is faithful, good and always with me. But lately it has been so hard to write.

My last blog was titled – when your mess is your message, but its still a mess. I haven’t written since… because the mess took over.

At the beginning of the school year we were in awe celebrating that our youngest was joining his older two siblings at their school as he was mainstreaming out of therapeutic school.

At the start of this year (2023) I even applied for my first full-time job since before my 11-year old daughter was born!

We felt a shift. We felt a new season approaching. We spoke about it with anticipation and excitement.

And then it returned. The struggle.

That all-encompassing feeling I know all to well. When the tension at home rises. Sibling fighting, hostility and tears abound on a daily basis. Phone calls from school increase. Threats of school dismissal become a reality. Medications that your child needs go on back-order. Grades fall. Unexpected financial strain. All the while, YOU Mama – just went back to work, and are blaming yourself for all of it.

And then,

Special needs child # 1 gets dismissed from school and now Mom and Dad are both working full-time while home-schooling the remainder of the year.

And then,

Special needs child # 2 gets his final warning and impending dismissal from school just a few weeks shy of the end of the year.

I tried to keep it together. Especially when I was at work at my new job, receiving phone calls that my son(s) are about to get kicked out of school. I tried to keep it together when attending the end of the year awards ceremony to support my daughter, but when they called my son’s name (who was at home awaiting a board review on if he could return) I couldn’t keep back the tears.

I tried to keep it together when I saw the Kindergarten graduation posts everyone shared, that we would not get to have, simultaneously wondering if he will even pass his Kindergarten Homeschool evaluation.

I tried to keep it together when my daughter sobbed after the end of the year ceremony when she exited the school to find me sitting on a bench with her two “dismissed” brothers who “everyone” was talking about and questioning her on.

That drive home from school I did not try to keep it together. I cried the entire 45-minute school commute home. A commute we chose for 2 years because it was one of those “stones” we turned over and committed to in order to set our kids up for success. That drive home, one interstate, 2 major toll roads and multiple others, I put on my glasses and just sobbed.

I cried because I knew WE tried. And when I say “WE” I mean ALL OF US. Jackson, Garrett, Gracelyn, My husband, Myself. All of their teachers and administrators, ALL of the ABA, occupational therapists, speech therapists, audiologists, specialists and doctors, WE ALL TRIED.

We left no stone unturned. And we saw them THRIVE.

It has been hard not to ask the question, after ALL that we’ve been through and all that we have worked so hard to accomplish for our children and family as a whole, why does it feel like we are back to square one?

Back to that marble apartment in India that amplified all noises elevating the shouting of our son with hearing loss and the yelling of our son battling anxiety. Where the noise level was so high and intense it felt like we were living life with a hostile action scene from a war movie playing on repeat in the background.

Back to the place of wondering if life will ever be calm.

I heard a quote once, “Roads were made for journeys, not destinations.” I love this because it reminds me NOT to fall into the illusion of “arriving” as if perfection or completion or complete wisdom is something that can be obtained on this side of heaven.

I believe, after years of unexpected heartache and celebration, we are ALWAYS on a journey, and we only seek to thrive along the way. Sometimes we will just survive. But we will not settle for that because we have tasted thriving. We know its possible. We will not give up hope.

So yea, – the past 3 months have been a STRUGGLE. Our mess is STILL our message, even though it is STILL a mess. And as much as my writings share stories of difficulty and God’s faithfuless, mercy and grace throughout, a lot of my blogs are written in reflection not in the midst.

And we are very much IN THE MIDST still. And God has comforted us and provided for us. We might be at a place where we are turning over stones and not finding anything yet. But I know that this season will pass. And I will never stop turning over stones and trusting in my Savior to be with me when it hurts, guide me through deep waters and lead me down the road HE has set before me.

I am comforted by scripture written so long ago yet feels as if it came from my very heart. And I am comforted in the truth that I am actually NOT enough. Therapy is NOT enough.There is no perfect school or state or home. But Jesus is and always will be MORE than enough.

Psalm 27:13 “Still I am certain to see the goodness of the LORD in the land of the living. 14Wait patiently for the LORD; be strong and courageous.Wait patiently for the LORD!

In it’s fullness: 1The LORD is my light and my salvation—whom shall I fear? The LORD is the stronghold of my life— whom shall I dread? 2When the wicked came upon me to devour my flesh, my enemies and foes stumbled and fell. 3Though an army encamps around me, my heart will not fear; though a war breaks out against me, I will keep my trust. 4One thing I have asked of the LORD; this is what I desire: to dwell in the house of the LORD all the days of my life, to gaze on the beauty of the LORD and seek Him in His temple. 5For in the day of trouble He will hide me in His shelter; He will conceal me under the cover of His tent; He will set me high upon a rock. 6Then my head will be held high above my enemies around me. At His tabernacle I will offer sacrifices with shouts of joy; I will sing and make music to the LORD. 7Hear, O LORD, my voice when I call; be merciful and answer me. 8My heart said, “Seek His face.” Your face, O LORD, I will seek. 9Hide not Your face from me, nor turn away Your servant in anger. You have been my helper; do not leave me or forsake me, O God of my salvation.

Full Circle.

Have you ever had a moment where you suddenly realize you have have come full circle? When you find yourself in the same place you once were, but this time it’s different.

For me, it was the day of a Doctor’s appointment. A very long-awaited appointment for my youngest son. We had waited 6 months to get in with this Doctor. In some cities and states, 6 months is a short wait for an appointment like this! But don’t get me started on that.

At the time this appointment held so much weight. I needed this doctor’s feedback. Without it, we weren’t sure where to turn. Which is why it is so ironic the memory I am about to share that was at the beginning of this “circle.”

5 years ago, I went to this very same doctor’s office, but it was for my other son. At the time I did not know this would be the first of many evaluations he would have in his life. The information I did know at the time, was that he was struggling with Sensory Processing Disorder.

He was only 4, but we needed to be sure that we were supporting him well because his struggles were already impacting his life across all settings. And as his mom, I desperately needed to know that my concerns and the ones that we were receiving from others were being heard and fielded more sufficiently than the anxious bouncing of my heart’s worries and stresses off my husband.

At the end of this evaluation, the Dr. handed me a diagnosis letter and a few referrals for therapy. But it was what she said at the end that never left me.

Yes, I had sought her opinion. Yes, I had brought my child to her for a formal medical evaluation. But I was not ready for her candid evaluation of what she informally witnessed about our family dynamic.

During this appointment, I was trying to share my concerns and answer her questions while managing a 4-year old with undiagnosed ASD and ADHD and a 2-year old with undiagnosed hearing loss. I was doing the best that I could. I mean heck- I was there, wasn’t I?!

But upon leaving she looked at me and said, “This is dysfunctional. This is not just Sensory Processing Disorder. This is not just one child. You need ABA therapy in your home.”

While I left that appointment with a formal diagnosis and a formal referral that I had sought out, I also left with resentment and anger and a feeling of condemnation.

In hindsight I think that I wanted to hear, “You are right mama. He has Sensory Processing Disorder and I will give you a referral for Occupational Therapy and everything will be ok.” That would have felt safe, having grown up the daughter of an OT. But she handed me one piece of paper that said not only Sensory Processing Disorder, but “potential ADHD and Anxiety” and another piece of paper that contained a referral for ABA therapy. The first piece of paper I held with my own anxiety because I associated those diagnoses with medication. The second piece of paper I held with fear because I had always known ABA to be the recommendation for therapy for a child with Autism Spectrum Disorder.

But of all the words that laid heavy on my heart, it was “dysfunctional” that pressed down hard on me the most.

I rejected her evaluation of us and began to think things like, “she has no bedside manner,” and questioned “what kind of doctor tells a mother this?” In order to maintain self I tucked those heavy words away and justified that it was just a piece of paper, a means to an end, a way to support my son. Like most mama’s, I pushed on. I pursued OT for Sensory Processing Disorder and put the rest of those papers in a “mental drawer” to be opened later, if necessary.

The irony of it all, is that I sought her out because I felt the dysfunction. Even today, the dysfunction is what I struggle with the most. I wanted validation and support. And she actually was giving it to me. She saw my struggle and basically said- “I see you mama. I see all that you carry. This is more than just ‘boys being boys.’ Your struggle is real.”

But at the time, I was offended and I missed it.

Fast forward two years to when I opened up that “mental drawer,” because IT WAS necessary. We were in a place where our hearts knew something else was going on and we were ready to know. Because not knowing was unhealthy. Not knowing was truly dysfunctional.

So we had another formal evaluation, but with a different doctor this time. ADHD and Anxiety were formally diagnosed and the recommendation for medicinal treatment was given… and accepted.

Now here we are, 4 years later. And I find myself back at that original doctor’s office. The one with “no bedside manner,” but this time for an evaluation for our other son. Which brings me back to the beginning of this story, where I found myself full circle.

This time I sat in the chair with what felt like a lifetime of experience behind me. I sat in the chair with the ability to communicate clearly and advocate well. I sat in the chair with the perspective of a mother who has received diagnosis after diagnosis, sat through testing after testing, tried medicine after medicine, school after school, surgery after surgery, therapy after therapy.

But this time I sat there knowing that she was right. Life was dysfunctional. And often still is.

I had no idea that her “calling out” of my reality those years ago would end up being one of the driving forces behind my perseverance for my children and my family.

Do not mishear me, I know that there is no such thing as normal. I know that life is hard and messy. But I also have come to a place where admitting that life for a special needs family has a different kind of stress to it is necessary. A kind of stress that can result in dysfunction that challenges our ability to thrive in society. It impacts everything. From schooling, to friendships, and finances. To attending church, having a pet, or playing a sport. There is no facet of life that special needs or disability does not touch.

So instead of avoiding those areas, I started to learn how to function there. I wanted to learn how we can thrive there. But I could not do that without acceptance of our limitations and asking for help. Both which are humbling to say the least.

I wonder how things might have gone differently if I was humble enough back then to ask , “What do you mean this is dysfunctional? And how can I help us be functional?” I didn’t realize at the time how much my heart ached for that.

But back to the present day, there I was, by God’s grace -much more confident in where I’ve been, confident in what I’ve learned, and willing to keep pursuing support and wisdom to help our family thrive. And her assessment and insight of our son’s needs was spot on. Not only was this doctor completing my sentences, but filling in the gaps.

Motherhood is such a sensitive subject. It’s such a sensitive experience. There is no one-size-fits-all approach. We all have different things to learn and we all find what works for our family. At the time during that first evaluation I had no idea what was coming. All I had was a Mama’s intuition. But it can be difficult at first to recognize AND respect your own intuition.

Where you are in your motherhood journey, what kind of lives are speaking into you, and how well you know yourself can all impact your ability to discern your intuition.

Over the years, I have come to know myself better as a mom. Experience has given me more confidence. Having a supportive community has provided the insight to help me see things more clearly.

I don’t know where you are at in your motherhood journey, but I do know that God chose you to be your child’s mother. I do know that sometimes there will be people speaking into your life with great wisdom, but also sometimes with great criticism.

I challenge you to sift through it all. Some of it will fall away very quickly- like when sifting sand at the beach. Once you lift it out of the water, it drains the tiny grains of sand away. But some of it is a little thicker and does not fall away as easily. And sometimes you may need a minute to look twice before you let it go. You may even be left with precious rocks that you will keep forever!

I understand that not everyone finds beauty in the same “shells.” We are all bent towards our own interpretation of value. And often we can find ourselves on the receiving end of something (like advice) that is unappealing. But like a clamshell that’s value is hidden inside, so unexpected and precious, it is important to note that you can find the most beautiful things in unexpected places.

In today’s world, we receive information from so many places, often more than we can digest. And there is some incredible wisdom out there too! Sometimes it comes invited and sometimes uninvited. It can come from a fellow mom, a family member or a doctor. But we moms do not have to take every piece of feedback or advice that we are given.

But remember that when you are given feedback that is a bit more seasoned with salt than you anticipated, and it stings – God does use all things for your good and HIS glory. Sometimes harsh comments and our most challenging moments can become the catalysts for strength and perseverance that we will need in the future for what life brings our way.

While I still feel that “delivery is everything” when it comes to communication, I am grateful for how the Lord used that doctor’s candid evaluation so many years ago to give me the grit I would need for today. I value the truth spoken in love. And I am grateful that in life the Lord provides mercy and growth, and the grace to allow us to experience a “full circle.”

Calling all Mama’s with No Margin.

– A continuation of “Because every mama needs someone who gets “it” and someone who wants to.”

There is nothing like those moments when you are talking with a friend and you share a struggle that you and your child are having and she says,

“Oh girl- SAME!!!”
Friend who gets “it.”

And then to make it even better, she either tells you a story about her child that is literally identical to yours, OR when you describe how you feel, what you’ve tried, or what else they (your special needs child) has done, she basically completes your sentences.

I have a friend who has been completing my sentences since I was pregnant with my first.

See, coincidentally we have literally been walking the same path. Our first born children were born within weeks of one another. They are both girls. Our following 2 children, both boys and spanning the same ages. We both had husbands in ministry, went from working to stay-at-home moms, lived in one of the most expensive suburbs of DC on a one-income salary and then moved away from Northern Virginia for our husband’s jobs.

Every time we catch up on the phone we pick up where we left off, as if we had seen each other yesterday.

So when we both started to recognize some neuro-divergent behaviors in our children, it almost made sense.

Almost.

Because life with neuro-divergent children does everything but make sense.

But there is something so comforting about sharing what your life is like with another, and it totally makes sense to them.

It makes sense to them when you say,

“It feels like we just can’t leave the house.”

“Other moms just look at me like we’re crazy.”

“I just don’t have capacity for anything else.”
Friend who gets “it.”

The need for connection and a desire to be understood is a natural desire. One that is so imperative for the health of anyone raising children in this world.

When they say it takes a village, it’s not just because we all need an extra hand (especially if the kids outnumber the adults) but because every mom needs a little reassurance!

For me, being able to connect with a mom who can personally relate to having a high needs child and all that it encompasses is so very necessary.

She understands when I talk about how hard it is to be in a community group at church because of the needs of our kids.

She understands when I share about how I wish our family could just feel “functional” for one day.

She understands when I say, I have no margin for anything else.

This kind of connection is so important for the mental health of moms, especially moms of children with high needs. This kind of connection provides validation, affirmation, encouragement and hope.

Every mother’s life holds differences and similarities to the next and I think it’s extremely valuable to have a life that is enriched by the perspectives and methods of both.

If you feel alone in your motherhood journey, I hope you won’t stay there.

Pray for the Lord to place that mama in your life that HE knows you need. He will provide. And do some digging.

When we came back from living overseas, we did not return to the home that we we left in Florida, we went instead to NY in an effort to live near family because I was coming to the realization that for me- having 3 young children, 2 of them with special needs, was going to require a village.

So when that attempt did not work out and we ended up moving back to Florida, I’ll never forget the advice I was given from a counselor who knew all that we had been through and all that was to come. He said, “Leave no stone unturned in an effort to find the help that you need for your family to thrive.”

That advice dove deep into my heart and mind and has been the energy that has provided me with perseverance when I have grown tired and weary in the face of opposition.

In this special needs life, there is great opposition. Some ignorant and some intentional. I have had to battle and advocate and be “the squeaky wheel that gets the oil” more times than I have felt comfortable. I have battled my own thoughts and the disagreement and disapproval of others. I have fought for 504’s, IEP’s, accommodations, explanations, appealed denied insurance claims, argued for the approval of services, jumped through hoops and over red tape all without an official job title even though more days than not it has felt like a full-time job.

But I have not done it without the support of other incredible women. From friends, to moms, to other “special needs mama’s,” to therapists, to doctors, psychologists and counselors. And above all, the Lord. He who made me in my mother’s womb, and made my children in mine. He who knows all of my days past and present, and the number of hairs on my head. He who has never forsaken me, loves me unconditionally, and teaches me how to do the same for my children.

So Mama- leave no stone unturned, find your people, and look up to the Lord- he sees you and hears you.

Every mama needs someone who gets “it” and someone who wants to.

Every day after I dropped my daughter off at pre-K, I would let my (then) 3-year old son run around the play area as I sat down exhausted from the “getting-3-kids-in-the-car for school drop-off gauntlet.”

As soon as I sat down and took a deep breath, I would find myself back on my feet, racing to prevent my son from the mishap that was about to ensue. And once the situation was intercepted and diffused, I would run back to the fussing baby I left in the stroller.

I recall thinking, why do I ever leave the house?

I watched as other moms sat, chatted and enjoyed adult time while their children played. It was so easy to assume. To watch them and think, why can’t I have it so easy?

Let me stop here.

Because despite my struggles, and despite what I know now about the needs of my boys, I know for a fact that NO mom has it easy.

All of us moms struggle and thrive, weep and rejoice. There is SO much about the experiences of motherhood that are universal.

But for sake of sharing this personal anecdote, I wrestled thoughts like that at that time. Because at that time- I was drowning.

I had 3 children- 5, 3 and a baby. In order for me to make it from the car into the building where my daughter’s pre-k class was, I had to use the side-by-side double stroller for the boys. I would force it through several doors that I fully believe widened supernaturally in a “Harry Potter” kind of way upon my passing through. I could feel some of the other moms watch me struggle and wonder why I was insistent on using this stroller. I tired of the “are you sure that’s gonna fit?” comments.

Trust me, I had tried the other option. But they all ended with the 3-year old escaping to the point of getting lost OR a full-out wrestling match between us, as I struggled to keep him by my side. Did I mention there was a baby in tow? And a 5-year old who needed my attention as she worked through all the feelings that going to school for the first time brings.

So yea. I used the double stroller, and I learned to not care.

It wasn’t just the transitions that required reinforcements. There were so many instances; on playgrounds, during playdates, being invited to another’s house for a meal, or even trying to catch up with other families before or after church where it was clearly evident that my child’s behavior was not approved of, and definitely misunderstood.

During the year that my 3-year old turned 4, I battled the urge to take him for an evaluation. I daily wrestled between thoughts that maybe there was something else contributing to his behaviors, or maybe it was just me. Maybe I was the problem. Maybe I wasn’t firm enough, consistent enough or tolerant enough.

That year was rough.

But it was also the year that the Lord gave me one of the greatest blessings I would ever have. At the time, I didn’t know it, but I felt it.

She was the mother of another girl that was going to the same pre-school. In fact, she was the one who told me about the pre-school. Her husband worked for the organization that we had moved from Virginia to be a part of and they were the ones that welcomed my husband, our two-children and my 8-month pregnant self to the area just a year prior.

The way they welcomed us was unlike anything I have ever experienced. It wasn’t just the way the way they stocked our fridge and were waiting to greet us at 10PM the night we pulled in with the moving truck, or the way they immediately connected us to a church and a community, it was the way they embraced us as if they had always known and cared for us.

I felt it this one particular day after we dropped our daughters off at pre-k and we met up in the empty church hall to let our boys play. As we started to attempt a conversation, my 3-year old started to fall into his typical patterns of “play” which meant intervention was necessary and conversation an illusion and I just couldn’t hold back the tears.

I was exhausted. Tired of trying and failing. Tired of trying not to worry about what other people thought. Tired of wrestling between thoughts of whether or not there was something wrong with him or something wrong with me.

She looked at me and simply asked, “Oh no, are you ok?”

Upon that, I could feel my body kind of surrender. I stopped wrestling my son to stay still, I allowed myself to kneel on the ground and exhaled some tears. I felt safe sharing with her my fears and concerns. I shared with her how I truly felt, and how much I had been wrestling with the idea of talking to someone about my anxiety as well as my son’s behaviors. I verbally processed with her how I didn’t know what to do first, but I knew I couldn’t just keep going on the way we were.

She not only listened, but without any suggestions, any correction, or the condemnation that can often accompany well-meaning advice, she provided affirmation, love and encouragement. She let me know that she could hear and see my anguish. But most of all, I felt like she let me know that she could see a mom who loves her kids and is just trying to do what’s best, and struggling to figure out what that might be.

Isn’t that amazing?

What’s even more amazing is that she has never stopped. That was over 6 years ago.

In the beginning, there was still so much unknown, still so much to learn. Over the course of our friendship my middle son received an additional diagnosis each year. He started with sensory processing disorder at age 4 and now at age 9 we have identified ADHD, Anxiety, ODD and Autism Spectrum Disorder.

My youngest son also was initially diagnosed with a speech delay, that after over a year of intervention changed into a concern for hearing loss. She was there with me in the hospital as he was put to sleep and I awaited the results. She sat with me as I processed that he had hearing loss in both ears and was going to need hearing aids. She navigated the darkness as we awaited the genetic testing results and then the reality of what was the cause- Usher’s Syndrome.

She’s been through 2 cochlear implant surgeries with us, she endures the noise volume in our house that is often off the charts and she never gives up trying to stay connected and get together even though we are limited in availability because of commuting to school and therapies. And she also tells me that I am doing a great job as a mom, usually at the exact moment I need to hear it.

I share this specific detail, because when you meet someone, when you find a friend, you connect based on what you know about them and how you feel around them. She did not know then, all that was to come.

She also has 3 children, similar ages to mine and that means her children have walked through the unknown with us as well. Which means her children have often experienced the struggle too.

I still to this day am amazed at how she continues to balance the parental obligation to protect and aid your own children when they experience negative behaviors from another child, maintain boundaries, and at the same time when needed offer grace, wisdom and correction in love! She has become a parent figure in the lives of my children that they not only can trust, but can rely on for a model of what grace and authority looks like. And she has lovingly educated her children on diversity, special needs and various disabilities.

I won’t forget to mention that her life has not been without challenge! She has walked her own journey of difficult pregnancies, early deliveries, navigating unexpected and unpredictable health needs for her children all while homeschooling and juggling the multitude of needs that motherhood in general brings. She has taught me so much. She is a warrior.

I don’t know how she does it, but she inspires me.

She inspires me to be a better friend.

At one point in my life I thought my friendships would be only with other parents of children with special needs. Which would be OK if that was the case. I thought that playdates would only be possible with other families who knew the social and behavioral struggles that we navigate every minute.

But her family has blessed our family so much with the opportunity to learn and grow and somewhat “practice” all they are learning in therapy about appropriate social behaviors, emotional regulation and self-control. Which I fully believe is the blessing of playtime for all parents and children, regardless of their needs! But there is something so special about our time together, because every time we are, for a moment, I feel like I am just a mom, and they are just kids. The “extra” realities or challenges we face or will face seem to fade away.

It can be very easy to only see life through one lens when you have children with extra needs because there is not an aspect of life that disability doesn’t touch. This can often create a barrier for myself and others from connecting.

I discovered at some point on our journey that honesty and transparency are necessary for me to care for my family well and for myself.

For a while I felt very uncomfortable using the term “special needs.” Especially in the early years when the most common response from others when I tried to explain that there was more to my child’s behavior than meets the eye was, “Oh, he’s just a boy,” OR “He just needs more discipline.”

It honestly took several factors for me to feel confident to use the term, almost as if I needed an acceptance letter into the special needs community.

When your child’s disabilities are not as visibly obvious as others- parents, schools, teachers, and even insurance companies can make it feel like we live in a world where we are either “too special needs” or “not special needs enough.”

It wasn’t until after connecting with other parents who had children with similar needs, and speaking with counselors, and therapists, reading books, and attending conferences that I started to realize using the description “special needs,” or “extra needs,” or even “child with more” was perfectly accurate to use.

When my husband and I took inventory over how much of our budget and schedule, energy and emotions and unfortunately our conversations revolve around therapy, medicine and doctor appointments, we began to feel affirmed in accepting that our lives were greatly impacted by the needs of our children.

That being said, I know for a fact that special needs or not, it is hard to find a loving mom or dad who doesn’t find themselves overwhelmed by or just constantly trying to balance all those things mentioned above. Every parent who loves their child is carrying a lot and deserves someone who can come alongside them and say, “I see you, and you are doing amazing.”

I never want another mom to feel unable to share their struggles with me. It is motherhood that unites us, and IT SHOULD!

They say it takes a village to raise a child and that is because child and parent alike need the support of others.

Every mama needs someone who gets “it.” Someone who can practically finish their sentences when sharing their heartaches and hopes. And every mama needs someone who wants to. Someone who is willing to meet you where you are, ask questions and learn how life is different for you as well as how you can relate!

While some of our experiences in motherhood differ, my beloved friend has always held a posture of someone who genuinely wanted to know what life as a mother of children with special needs was like, how I was handling it and how she could support me. And I can honestly say that her friendship is priceless.

I can’t wait to share more personal stories and thoughts in my next blog about how important it is to have a friend who has also walked your road before AND/OR is walking it at the same time as you! Stay tuned as I share how valuable it is to be close with other moms who have children “with more” like yours!

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.

Catch me doing good.

I had this miraculous moment the other day. That moment when everything you have been working on and everything your children have been working on collides into one beautiful, epic and effective conversation. It was an out of body experience to say the least. I felt like I was watching this interaction take place from above and I was witnessing all the parenting tools I have learned being utilized AND executed successfully. To make it even sweeter- it was all falling on receptive ears!

Not only was I witnessing this miracle, there were witnesses present!

In that moment, I could feel it in my entire being that I was actually doing something right. And afterward, I received one of the best compliments I’ve ever had! This most wonderful witness encouraged me that I had done a wonderful job handling my children in the midst of some unruly behaviors. And then she said, “It was as if you knew all the right things to say!”

Mic drop.

What?!

I could not believe my ears and laughed in disbelief and shock. I was also close to crying in gratitude for it’s not every (or any) day in motherhood that someone witnesses you getting it right, AND lets you know! So many emotions all at once! I quickly confessed that I could not take credit, but the years of intervention and therapy that my children and I have experienced for their various needs were to thank. But then again, I have always struggled to take any credit.

Don’t get me wrong- I want the credit! But I often struggle with feeling undeserving of praise, or even doubtful of it, as if it happened by accident or something. Simultaneously, I also believe that anything good that comes from me is because of Jesus! But like most human beings, I can’t help but hope that I am doing something right and if I am, someone will let me know!

Have you ever tangibly felt yourself trying SO hard to get it right? Trying so hard to get better? Maybe it was piano lessons or a sport when you were younger. Maybe it was cooking meals for your family, or sticking to a budget? Maybe it was not getting so angry, or having more patience?

How about your children? Have you ever watched them experience that moment of success! That monumental moment of potty training, or eating with silverware? Cleaning their room or writing their name? I’m sure the list of things that we ourselves and our children have worked at are endless. Some progress is easier to notice, and easier to celebrate. Some progress is less obvious because the number of fails overshadows any small glimmer of growth.

Me in total awe as Garrett hopped up onto the dentist’s chair, ready to go.

Early on when my son received his first of multiple diagnoses, the Dr. gave me this advice, “Catch him doing good.”

She knew that catching him making mistakes or wrong choices would be all too easy. She knew that the attention I’d have to give towards correction would dominate. She knew that as hard as he would have to work in areas such as speaking kindly, having patience and self-control, I would have to work at catching him when he did.

Depending on your personality, you may need to work on catching yourself doing well too! I would argue that the intrinsic motivation that results from experiencing yourself doing something well is way more powerful than the extrinsic motivation that comes from fear of making a mistake.

I can see it in my child’s eyes, they sparkle when I shout, “That was so great! I loved the way you used your words and asked for help!” Just as I am sure my eyes sparkled upon receiving the compliment from this sweet woman regarding my handling of some difficult behaviors.

What you can see- 3 kids playing a game. What you can’t see- mom jumping up and down in joy celebrating three kids playing a game TOGETHER.

One week later, in the same location, and with the same friends, those difficult behaviors were not received with the same patience, grace and effective communication. Instead I felt myself exhaling, “Guys, please just stop.”

I am not completely sure why I felt so different this time. So unable to respond with the same tools. Maybe it was less sleep, or the weight of other worries and to-do lists occupying my mental space, but I just couldn’t shift into that same mode of parenting that felt like such a major milestone the week prior.

And that is OK. Because even though I did not have a repeat of that same stellar performance, I remembered it.

I REMEMBERED it even in the midst of my impatient response to my children.

It came up in my brain simultaneously as I was about to lose my cool.

It became a new reference point for what I am capable of.

And instead of giving way to my less than ideal parenting, I recovered quickly and began moving once again in the direction of parenting the way that I had the week before.

It is the same with our children. When they take 5 steps forward and make it from mommy’s arms to daddy’s, and then the next time they fall after 3 steps, that is OK. And so it should also be OK when they show incredible self-control one day, and the next day, maybe not as much.

Personally, I had noticed that if my child had multiple successes in an area that he had been working on like keeping his hands to himself, but then reverted back to hitting his brother despite the progress he had been making, my heart would sink to the lie that he would never truly grow in this area. It was almost as if the behavioral “high” made the following behavioral “low” even lower. But it is easier for our minds and bodies to remember the negative than it is the positive. We have to work at mindfulness to retain every ounce of a positive experience. And if we do this, we can nurture the brain to remember our successes so much more and as a result develop a greater chance at repeating them!

Imagine that kind of impact in a child’s brain. For every time they are losing self-control, a memory of when they displayed self-control and were utterly praised for it would race to the surface as if to say to their “down-stairs brain”- “You got this! I saw you do it before! You felt it too, you can do it again!” Imagine getting to see their eyes sparkle more and more!

That time he asked for another soda and when we said no, he said, “OK.”

I am so grateful that this woman “caught” me doing something good. It inspired me to pay more attention. I want to catch my children doing good as often as possible, and celebrate it! I want to catch myself doing well and let myself feel good about it!

I want to spend less time soaking in their mistakes or my own, and more time embracing all that we are capable of. I think it is when we focus on these things that we truly create space for ourselves and others to continue to surprise us!

That is all, for today.

Not ready.

I never thought I would get to a place where I kind of don’t want summer to end.

It felt like yesterday when we were rushing to make sure that the majority of the summer weeks were accounted for because if we didn’t……..

AHHHHHHHH!

At the time, back in May, my chest got tight just thinking about the potential unplanned weeks ahead. The Fear of the combination of boredom + siblings + FLORIDA HEAT BEING/STUCK INSIDE would practically raise my blood pressure! Even though this was only my 2nd summer anticipating the “school is out of session” dread, memories from last summer’s cabin-fever days are literally burned into my brain.

Exhausted parent/oblivious child. I wouldn’t have it any other way 🙂

For most mom’s I imagine the song, “School’s out for the summer” has more of the “Jaws” theme song ring to it versus the celebratory appeal it has for the kids. I confess, I have not totally experienced the full weight of the “school’s out” feeling. Yes, we have homeschooled in past years, but to be honest the majority of school days were always so interrupted that I’m not sure I have ever really had that so-called “liberating” feeling of having all of my children in school at the same time. At least not for a full day.

For the past couple years, school days have always been brief or interrupted. Our youngest only had school for 5 hours a day, and our middle child often required a mid-day pick-up or need for mama’s intervention. Not to mention half of the week, the school days always felt cut short due to a doctor’s appointment or therapy session. Nevertheless, what I assumed was going to be a summer heavy-laden with the weight of having no break from the kids, turned into one where I rather realized the absence of the heavy weight of commuting to school and appointments.

In the beginning of the summer, several attempts were made to stay consistent with my son’s therapy schedules. But sickness and travel put us in a place of going over a month without services! For those who are familiar with the significance of a consistent therapy schedule for a special needs child, forgive me- it was not neglect that we went this long! I found myself in a panic on week 3. I could tell that we were both going through withdrawal as he could not self-regulate for the life of him and I started to shut down too.

But something happened in that 4th week.

I forgot.

I stopped thinking about what he was missing.

I stopped worrying so much.

I started using what I knew, exercising the ways I knew to support him instead of focusing on what was lacking.

A moment of actually not feeling so anxiety-ridden.

The absence of therapeutic intervention began to lose its intensity. My muscle memory kicked in and we managed. I mean, this wasn’t our first rodeo without regular therapy. A little over two years ago, we basically had gone a collective 18 months without therapy during our 9-month stint overseas, plus 9-month temporary move to NY. Not that I recommend it, AT ALL! I have tried to block some of those days during that 18 months out of my memory!

But when we returned to Florida after our summer travel and there were no signs of sickness preventing us from getting back on the therapy schedule, we got that first week of appointments set on the calendar.

But to my surprise, I had a great deal of mixed emotions.

I was so excited to get him back to the supports that he needed. And honestly, I was so excited to have that support for myself too! I look forward to those post-session debriefs because I get to ask questions to someone who can finish my thought, knows exactly what I am talking about and can provide me with the tools to better support my kids! That and we just have the best support team for our kids!

But after spending over a month without any appointments on the calendar, when it was “back to the grind” time, I had almost completely forgotten about the commute and all that goes into getting to an appointment!

I had forgotten about the challenge of trying to schedule appointments, that mostly likely would need to be rescheduled. By no fault of anyone either, it just is what it is. And returning to the juggling act with my spouse as we lay out our calendars and discuss who is taking which child, to which therapy and for what hours of the day was not missed either. I had greatly enjoyed the break from insurance company claims and followups as well as wrestling my kids into the car for that 40 minute drive there and back!

Garrett waiting patiently for his brother’s OT session to end.

I think I also enjoyed the rest from reality and all of the explanations.

Getting ready for school means getting ready for the reality that we have 2 children with IEP’s, which can require a lot of explanation. That our daughter now has BOTH younger brothers attending her school, and she is already anxious about needing to explain their behaviors to all of her friends. (But what big sister doesn’t stress over that!) That the phone calls and emails home will start again, and explanations due for behavioral incidents are inevitably on the horizon.

School starting up again brings about the reality that we took on a pretty hefty commute for private school because an alternative environment was considerably necessary. It brings about the reality that with that commute and the various therapy appointments, and potential extracurriculars, I will be in the car A LOT.

I share all of this because no matter how many times I have learned it before- I relearned this valuable lesson once again- “the grass is never greener on the other side.”

And even though I write from a perspective of special needs parenting, I know so many of my thoughts and struggles are not isolated to this arena, but are relative to parents in general. Some of us may spend more collective hours of the day with our kids because they are still too young for school yet, or they may homeschool. Some of us spend more collective hours in the car with our kids because of school commutes, or extra curricular activities. Regardless, we all LOVE our kids but we all can get weary and tired of being needed. We all love spending quality time with our families, yet we all need a break from time to time.

One other way I love that parents can relate to one another despite their family dynamic, is that as parents we are always adjusting. We continue to adjust our expectations based on their age and stage. We continue to adjust our priorities to what is best for our people as a whole. And we continue to adjust our outlook based on what life teaches us.

For me, I have adjusted my outlook on “summer break.” Through a change in routine and being removed from the typical and expected, I gained space to see outside of my assumptions.

I assumed that summer was going to be hard. We are a lively family of 5. The noise decibel in our house is way higher than healthy. Everyone is spirited, opinionated and willing to stand up for themself, (which I know will pay off one day.) Many of us, (possibly even myself-haha) are a work in progress when it comes to emotional regulation. But you know what? When people ask us, “How was your summer break?” I love (and am somewhat shocked) that my answer will be- “It was so great!”

We may have driven each other nuts on occasion, but we also made some incredible family memories! We may have battled boredom some days, but I got to witness my three kids play together voluntarily! As they ran through the house living out a story of imagined characters in an imaginary world, my heart lept thinking about how no matter what friendship troubles they might have had or will have, they ALWAYS have each other.

And I am grateful for how the summer provided space outside of the routine and mental space too. Room for me to consider how much my children have grown. And myself too.

Space to realize I shouldn’t be too quick to assume that last years troubles will be on repeat.

The grass is green on BOTH sides, it just takes cultivating.

It is a new school year.

New teachers, new backpacks, and maybe even some new friends!

Even our therapy locations have all changed, and maybe even our therapy needs?

And the best NEW of all…. I heard there’s an express lane on our route to school.

When “Don’t forget to take care of yourself Mama” makes you want to punch a wall.

It is a phrase that is often delivered by well-meaning friends, family members and doctors. Delivered to you with the best of intentions. And it is often offered to you by the very people who know how hard it actually is! So why does this phrase often incite frustration and cynicism inside the sweet mamas receiving these words instead of the support and comfort they were intended to deliver?

It might be because she is sleep deprived to a level comparable to torture. Her brain is functioning at subpar levels and now focus, logic and emotional processing are extremely impaired.

It might be because she has tried to “sleep when baby sleeps”- but baby doesn’t sleep. Or, as soon as baby falls asleep and she puts him down, he wakes back up. She finds herself broken down once more by how close she was to rest and is convinced that she may never sleep again.

Maybe she has more than one child, and when the baby rests she is making sure to give her toddler one-on one time. Maybe she is postpartum and her hormones are all over the place. Maybe she promised that she would breastfeed and is determined not to give up, but the fight for success in this area is suffocating her physically and emotionally.

What if she just went back to work and it is taking all of her to perform her job well, and return home with enough energy to care for her kiddos, make dinner, try to keep up the house and still connect with her husband?

What if motherhood is so much harder than she thought? What if she is not the mother she thought she would be? What if her children’s needs are much more than she imagined? What if all of her hopes and ideals about motherhood have been challenged beyond repair?

Now imagine you see her, and you can tell she is weary, tired and emotional. And you put your hand on her shoulder in response to her venting and say, “Don’t forget to take care of yourself, mama.”

Even the most well-meaning comments can feel like punches in the stomach when your physical and emotional state is under water.

I have felt this “punch in the stomach” more times that I can share. I have been in a place where hope felt painfully impossible to even think about.

Knowing all too well how this feels, I have found myself wondering lately, “How did you end up becoming someone who says this to other moms? As I share with others about the nutrition and fitness program that I am a coach and client for, I have wrestled with this message of self-care to the mamas out there, when I know how it feels to be in the trenches.

I recently put together a montage of photos of my 3 children and I from the past 10 years. The photos spanned from pregnancy to birth to toddlerhood including both painful and precious moments we experienced. The message that I shared over this collection was meant to acknowledge how powerful motherhood really is. It holds power in the weight of its most miraculous and most painful experiences and memories. Motherhood holds power in the dichotomy that most of us could not wait for this season of life, yet once in it, we realize it is SO MUCH MORE than we could have ever imagined in both incredible and exasperating ways. It holds power in the ways that it has involved, impacted, and changed our minds and bodies. So much power that the thought of taking care of yourself when you have such a great responsibility to take care of others seems not only impossible, but even, dare I say- irrelevant.

Yet, even after acknowledging all that, how is it that I have found myself on the other side of the motherhood “fence,” encouraging other moms to NOT forget themself in the process.

Have I stumbled upon the “secret” to self-care? ABSOLUTELY NOT. Do I have it all figured out? HECK NO. Is my life easier now and without struggle? As Pete the Cat would say, “Goodness No.”

But just like the meaning behind the former name of my blog, “Yesterday’s Kurta,” every yesterday has a story to tell.

While living in India, every Kurta I wore had a major story to tell. A story of hardship and discovery. So just like every yesterday has a story to tell, every person has a yesterday- A unique experience that could provide encouragement and connection to others who might be journeying through something similar. Each person is also in a different season of life. This means that they’ve already traversed through your current life season. Even more, one thing we all have in common even if our experiences or seasons of life vary, is that loneliness and discouragement are always beckoning on our doorstep. Always “prowling around like a lion waiting for someone to devour.”

Reflecting on our yesterday’s often provides us with the ability to offer others relevant wisdom and comfort. And when reflecting with an attitude of thanksgiving, we can see just how far we’ve come. Sometimes the ability to tell someone I know what you’re going through, you’re not alone, and I will help you go through it can be priceless.

When I am facing a challenge, or helping others I am often reminded of the book, “Going on a bear hunt.” With every obstacle the family experiences on their journey to find a bear, the chorus that repeats is,

“We’re goin’ on a bear hunt,
We’re going to catch a big one,
What a beautiful day!
I’m not scared

Oh look! It’s some long, wavy grass! (Or thick mud, or a dark forest, or a pond, or a snowstorm, or a dark cave…)
Can’t go over it,
Can’t go under it,
Can’t go around it,
Got to go through it!
We’re Going on a bear hunt By Michael Rosen

Every person has a forest or a snow storm or pile of muck that they couldn’t go over or under, but had to go through.

For me, one of my “forests” was when my second child had horrible colic for the first 6-9 months of his life. I think back to that time and recall so many tears, so many books rummaged through for help, so many walks by myself because I needed a break from the crying (that despite all of my efforts) I could not relieve. So much gripe water, and trial and error with formula that always ended in projectile vomiting. Then I spent 8 weeks dairy-free to breastfeed because that was the only option. My sweet poor babe was on both C-omeprazole and Zantac to relieve some of the pain of acid reflux. The pediatric GI somberly informed me that the small sphincter at the base of his esophagus just needed more time to develop and time was one thing I had no control over. I remember thinking during his pregnancy (which was very painful with constant braxton hicks starting at 24 weeks) that maybe he would be an easy baby. Wishful thinking.

As hard as it was, his pregnancy toughened me up a bit and prepped me for his colic. And now that I think of it, his colic may have strengthened me for his childhood. Over his 8 young years of life we have been managing Sensory Processing Disorder, ADHD, Anxiety and Autism Spectrum Disorder. Navigating all these challenges potentially built in me a stronger base that would ultimately prepare me for my third child, who I did not know was going to have Usher’s Syndrome which comes with its’ own set of unique challenges. The needs of my children have broken me down in so many ways, but the ways that I have been rebuilt are priceless. Every single struggle has sent me running to Jesus. And with HIM and all that this life has allowed, I am much stronger than I ever was or ever thought I could be. My mind likes to tell me lies about who I am and what I am capable of, all based on how hard things have been and my feelings in those moments. But Jesus gives me strength unimaginable. He give me strength to consider hope, when everything around me tells me otherwise.

So back to the beginning. How am I able to offer those (sometimes irritating) words to other mamas out there now?

Maybe I have simply arrived in a new season of life. Maybe I have more room to breathe to consider taking better care of myself. Maybe I am less sleep deprived, maybe my kids are in school, maybe I have help.

Or maybe, just maybe, I couldn’t stand NOT taking care of myself anymore.

I started to look around and realized that the waves were never going to stop coming. The obstacles on my “bear hunt” were endless. I had and continue to have legit reasons to explain my lack of margin in my life for self-care. But I tired of them. I tired of the hamster wheel of struggle, of treading water and receiving a life raft just moments shy of what felt like drowning.

So maybe you too feel a weight on your back when someone tells you to take care of yourself.

Maybe it’s because you’ve tried before and “failed.” You’ve seen others succeed when you couldn’t and it hurts like shame.

You see no light at the end of the tunnel and no possibility for hope. The obstacles are too great.

I want to enter into that space with you and say, I know. The weight of what you are feeling is real. It really is all TOO much. There really IS no margin. And having a hope for something better often feels like a trick.

But the alternative to hope, is bitterness and resentment. The alternative to trying is being stuck. The alternative to asking for help is relying completely on yourself, burning out and falling prey to isolation, cynicism and becoming someone you swore you would never become.

Sometimes it takes one simple moment of humility, acknowledging you need help to take care of yourself. One simple prayer asking Jesus to show you how. One simple decision to break the pattern of giving up, and begin the habit of taking one baby step at a time towards healthier choices. As mamas we know all too well what “baby steps” look like. If those sweet toddlers keep getting back up, so can we.

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…..

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.”

“That’s great… for you.”

I was in a parent workshop listening to a speaker talk on the subject of behavioral therapy for children. I could sense that there were parents in the room, like me, who were in the thick of the struggle. But there were also parents in the room who were on the other side.
The side where victory or freedom or hope lives.
During the talk, I had to frequently battle the voice in my head that said, “Your situation is more complex, your child’s’ struggles will never be fixed, you will never be on the other side.”
I hate that voice. I believe it to be the voice of the enemy. The “Father of lies” who wants us to remain trapped in discouragement, devoid of hope.
But I have become aware of it enough to prepare myself before attending these talks. I prepare myself by praying- “Lord help me hold every thought captive to you. Help me hear what is it you have for me today.”

Sometimes when I share about the program I am a coach for and how much breakthrough I personally have experienced in the areas of strength gain and reaching health and fitness goals, I imagine a person out there on the other end, receiving my message thinking- “That’s great that it worked for her, but it will never work for me.”

I can’t tell you how many times I have felt this way in so many areas of life.

It brought me back to the days of sleep training, breast-feeding and behavior training. The days when well-meaning mothers and friends would share how their child is sleeping through the night, or how their child could listen and obey right away, or 1-2-3 magic was the key. They were not to blame, but I often felt so discouraged.

But then I remember when I read the book Healthy Sleep Habits Happy Child and applying those strategies literally changed the game for getting our firstborn to sleep through the night. But I hesitated sharing about that book because even though it worked for me, I didn’t want to frustrate someone else.

Because so many times had I sat around the table with other moms listening to their success stories thinking that’s awesome… For you… But it won’t work for me.

Flying solo with all 3. Wondering if things will ever be simple again haha.

I can even recall the days when I felt like shouting on the rooftops that prayer and turning to Jesus was the answer for those who were struggling and in pain, but I feared offending them.

How often do we see the success of others and think there has to be a reason that they were able to reach their goal, a reason that sets them apart from me, a reason that makes success more possible for them than it is for me?

How many times have we been told that we just need to try harder? How many times have we been told that we just need to believe it and speak it into existence? And how many times have we still NOT experienced victory?

If you have read my blog post “On the other side” or “Hope” I wrote it because it was a significant moment in my life when I could tangibly feel and see what it was like to be on the other side of a struggle.
Seeing Jackson’s progress with speech and language development ever since he received adequate hearing has provided me with the most profound experience of recognizing and celebrating growth, change and victory. But it was not even close to a quick fix to get there.

Jackson winning the sportsmanship medal!

In a lot of my blogs I talk about the blessing that suffering can bring. Trust me I do not enjoy suffering, in fact I used to avoid it at all cost. I would not make a move, make a decision, even consider taking a risk unless I knew that the probability of success was substantial.
It took me 10 years to get to a place of willingness to move overseas for fear of the struggle. But I have realized that it has been the struggle, the long-suffering, the day to day battle, that has made the awareness and ability to embrace being on the other side so sweet.

We cannot predict how quickly success can be achieved for others, but we can share our struggles and our wins in hopes of bringing others closer to being on the other side of their struggle.
Everyone’s struggle looks different and everyone’s victory looks different. In fact one mother may receive seven different methods for getting her child to sleep through the night before she applies it and it works. Does that mean the mothers before should not have shared?

One woman may try hundreds of diets or fitness programs before she reaches her health and fitness goals does that mean all of her previous efforts were in vain?

Which brings me to the question,
is it OK to share what has worked for you?
My belief- ABSOLUTELY.
If someone is grieving, I’m gonna pray for them.
If someone needs help with math- I will DIRECT them to someone who can (lol).

And if someone wants to improve their health and wellness, I can’t wait to share about the FASTer Way!