When Every Day is Hard

I am a special needs mom, though his special need is not something physical or easy to see. Instead my Sweet Boy-Child seems typical. His special need is in his mind.

Special Needs Journey

Sweet Boy-Child has developmental delays and speech delays. Though not the definition of special need, they do make life harder. They do impact him, our family, and his everyday life. Along with these delays, Boy-Child battles severe anxiety. I know many people suffer with anxiety, but Boy-Child’s makes everyday, typical life difficult. His anxiety is severe. Coupled with his delays, some days and some situations can seem impossible. Interwoven into his anxiety are sensory processing issues as well. At this point, it is difficult to unravel whether these sensory issues are due to his brain’s inherent make up, or because of his severe anxiety. Sweet Boy-Child battles oh so many things that make his everyday life hard: severe anxiety + sensory processing, developmental delays, and speech delays. Each layer adds to the prior one, leaving us in a confusing jumble.

Each day is met with different struggles, different situations that may trigger a landslide of events. Some days the triggers are small but have great, far reaching effects (like an ant outside) and other days the triggers are big with more minimal effects (like Baby Boy shouting or touching). No matter what transpires, the day is hard. Be it for only a moment or something bigger that reaches deep into my heart. The day is hard.

Today is one of those “tentacles of hard beginning in the morning and reaching deep into who I am” hard days. They touch my soul. And it stings.

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It began with a Lego. Sweet Boy-Child has been browsing Lego Magazines early in the morning (because he wakes too early).  Lately, he has found his life to be lacking all.the.legos. But more specially, all the creepy Legos. You see, like most preschoolers and toddlers, Boy Child is fixated on one thing. Unlike most preschoolers, the focus is one that is extremely difficult to let go of, and it ebbs into every segment of his life. Unfortunately, and mostly to the thanks of having a big brother, his focus is on bad guys and creepy things (hello fear of the dark, sleeping alone…).

Anyway, we try to teach and practice gratefulness daily, but this theory is difficult to impart to Boy Child. His developmental delays significantly impact his communication. He has difficulty understanding what I am saying to him and expressing himself in return. This has gotten better, he has words to speak now but there are times when his understanding isn’t there. And with topics that are more abstract, this is magnified. So we are all left feeling frustrated. Throw in 3 other siblings, rushing to get ready for school, and all the difficulties of this life are blown out of proportion.

But let’s pause for a moment. Remember that we are dealing with more than delays and sensory issues, but also severe anxiety. An anxiety that made it impossible to be outside if it was windy, an anxiety that made it impossible to walk on the wood floors of our house because of the wood grain. And suddenly, it becomes easier to see how  a seemingly simple frustration so easily escalates when you can’t understand.

I may understand the reasoning, but that doesn’t mean it’s easier.

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The morning continued and the older kids got to the bus stop. Boy Child is still frustrated with me, but we push through to get on our way to preschool. Once there, it erupts. He clings to the car, he screams and cries. And now that he can communicate, the cries are heart-wrenching cries to stay with me. Cries of “I just want to be with you, Mommy.” And I can’t even. As one of the many therapists (who are oh so close to my heart) pull him from the car, and from me, and carries him into school, I sob.

I know he will be okay at school. But I know him. I see him. I understand the pain, the fear, the anxiety as he is brought into school. And it breaks this Mama heart. And so I find a parking lot to cry. Again.  I know he will be fine once he gets past the cubbies. I know he will be okay once he gets into his school day routine. But for now,  I let my tears be the voice of my heart. I let my tears speak because right now, right now, I just can’t.

And I wonder. When will life be easier. Please don’t get me wrong. It is already night and day better than it was a few short months ago. We went from 40 words to sentences for goodness sake! But that doesn’t mean we’re done. He’s not done growing and neither are we.

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Though this journey has been hard, it has also been beautiful.  I can look back at each step, and I know that they are all good, even if I don’t see the good. I can look back and stand firm that God is using it for His glory. Even these tears. And I am reminded, as I continue to re-read the Bible, that there is victory in the Lord.

“The Lord is my strength and my song,
and He has become my salvation;
this is my God and I will praise Him
…and I will exult Him.” 
(Exodus 15:2)

Wherever you are in your Motherhood Journey, know that I see you and that you are not alone. I know that our journey may not look like other special needs journeys, but know this: there are no in between families. It just doesn’t exist. Sensory children, children suffering anxiety, children with physical special needs – they all need help. We all need help.  Let’s band together. Let’s smile at one another, because life is hard. We can’t always help shoulder one another’s burdens, oh but how we can encourage each other. And from one mom to another, I think that is a special gift.

So from one mom crying in the parking lot, to another mom hurting, special needs or not, wherever you find yourself. I see you and you’re not alone. 

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36 thoughts on “When Every Day is Hard

  1. Both my husband & I work with children who have difficulties like your son. You carry a difficult burden, & our thoughts are with you.

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  2. Thanks for sharing and opening your heart and life in such a raw way. It is beautiful. You are not alone either and I see you, friend. I think that is really what we need when we walk through these difficult times. The enemy wants us to think that we are isolated, alone, and failing, but that is so far from the truth. Much love to you, Ashley!

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  3. Ashley let me start with congratulating for being a mom with such great grace. No work with children with Autism and special needs and see everyday the struggle the parents go through daily. Some parents do not make much of an effort. But then there are amazing parents like you. I admire the strength and determination you have because your beautiful little boy needs this. There is no one else who will show him Gods love than his parents, there is no one else who will give grace like his parents. I pray God continues to give you strength, wisdom to teach new ways everyday on how to cope with his anxiety and joy through the bad and good days. Praying for you and your family today.

    Xoxox
    Gema from belovedgems.org

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  4. Such a powerful post. I have twins that were born premature, and we are not ever sure of its full effects on them. I, myself, suffer from anxiety. I want you to know that you are not alone either.

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  5. Oh man, that’s tough. It’s good that you’re seeing improvements, though, as you’re noticing the change to being able to speak in sentences–that must bring some hope into what is not an easy situation.

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  6. Wow, I love your heart here. So vulnerable and honest and beautiful. My husband is a special ed teacher and it is even more heartbreaking when those kids come from families who just brush off their struggles or do things that make them even worse. Your heart to love your son and understand who he is (instead of just trying to change him) is so wonderful, even though I’m sure it’s so hard as well. Thanks for sharing this!

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  7. I was a special ed teacher for three years. I loved my students a whole lot and it was hard. It gave me a glimpse into the parent’s eyes and how they never could truly disconnect from their child and their role as a caregiver. You’re doing a great job, Momma!

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  8. You are a wonderful mom! It is so hard being a mom. We all struggle and go through hard times but we need to stick together and have each other’s backs.

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  9. I have a sister with special needs. She will never be able to live on her own but I am proud to say she is her own person. It has never really gotten easier for my mom but my sister’s mental capacity is finally catching up with her age and she’s able to now cook for her self, clean and many other things. Its a process but as my mother always says, “the most rewarding one she has ever done.” So good job mom and stick to it!

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  10. This is beautiful and we see you, too, Mama.

    Our kids don’t have special needs, but your words made me think of how there are still hard days when I wonder how I’ll ever be enough for these little girls of mine. Can I ever be what’s best for them? Maybe, maybe not. But you’re so right. God brings glory in all of it. When I step back and look, I too can see how far we’ve come. One day at a time God’s teaching me how to be Mom to these girls and I’m hopefully teaching them how to navigate the world as themselves, with all of their unique gifts and needs.

    I see a certain twinkle in the eyes of that sweet little boy of yours. How exciting that he’s begun to have the words to tell you how much he loves you—even when it breaks your heart a little. One of the joys of motherhood is having your heart break for someone you love SO much.

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    • Oh Brooke, thank you. I totally feel that way too (even with my typical children) – and the answer is always a resounding no. I can never be enough, but I can point them to the one who is. And that is enough.
      And oh how I love that his personality is seen, even in a picture. Because that twinkle is so very real. And so very beautiful. Thank you, friend.

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  11. Oh man sweet friend – love your tender heart and your beautiful boy. He’s not done growing and neither are we. May it always be true. I have such a soft spot for the special ones, I taught special ed for years and I still think I learned more for them than they ever learned from me. Love to you on hard days.

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  12. I had no idea. He’s absolutely adorable. I love the spark in his eyes, the joy that he radiates in the photos. I’m so glad I read this tonight. I am a new Mother to a special needs child. The child we recently adopted is special needs and now I find myself navigating a land I’ve never before known. It’s overwhelming, it’s daunting, it’s the highest joy and the crashing lows. It’s also why I haven’t posted much with PAM at SPH . Ha! Blessings tonight. Thank you for the love. I feel it coming through your heartfelt post.

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    • Oh Jessie, thank you. I am so glad you could feel the truth behind my words. So thankful for this community of Mamas. And thank you for stepping out of your comfort zones and saying yes to a child with special needs. You are strong and courageous and I will be praying for you in this new journey. 💛

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  13. I somehow just got around to reading this tonight…and it nearly took my breath away. Every challenge you describe is underlined and highlighted and italicized with your love for your son. It’s just so achingly beautiful. Listen, I certainly won’t pretend that I know what your journey is like. But I have walked beside many, many parents through such strangely similar journeys — and you, friend, are a remarkable one. Your son is one lucky, lucky little man. Because of you, because of God, and because of the amazing little person that he is, he’ll break through and exceed and overcome barriers. He just will. 🙂

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