The Lonely Journey: What I Want You To Know

We all walk lonely journeys. Each is unique. But one thing they all have in common: they can build walls that separate us from others. They can complicate family units. And they can even destroy marriages if not careful.

Somehow it seems harder when the journey involves your child. They unintentionally isolate. They can break friendships and rob us of meaningful time with others.

Some have very specific opinions about what they see in your child. Others have no clue and form their own conclusions about the situation. Some disagree with the way you’re handling it. Some are simply uninformed. Some may want to help but aren’t sure how or even what to say.

Please, don’t walk away from those who are hurting in their lonely journey. It’s hard to put yourself in someone else’s shoes, but try to understand. Research their struggle if you can; ask them questions; be a support and encouragement. Don’t just turn away from them. You might be the only one who hasn’t.

I wasn’t sure how much to share in this blog. How much exposure is helpful? Is it fair to my son? But, if it makes a difference or helps another to understand or be understood, then—to me—it’s worth the sacrifice.

“He came out screaming and hasn’t stopped; it’s just changed.” This is what I told a doctor this week about my son.

Several months ago, he was diagnosed—or so I thought—with ADHD. I even wrote a blog on it. But the more I gathered information and observed my son, the more ADHD just didn’t quite fit. I didn’t feel peace about it. Turns out, the doctor withdrew the diagnosis as soon as we exited the building months ago.

This week my son was diagnosed with Autism. Go ahead, judge. I’m sure I’ll get grief simply for divulging the information.

But here’s what I want you to know:

I don’t talk about Autism for sympathy or pity. I talk about it to open a door into our lives, to help others understand, to educate, and build acceptance for children and adults living with Autism.
–Hero Culture Autism

Most have no idea the journey parents walk with a kiddo who is not typical! Most have no idea the years of struggle. The many, many, many prayers for us and for our son. The things we tried but unfortunately didn’t work. The helplessness because we didn’t understand what was going on, let alone how to help him. The hopeless days as we watch our son unable to settle himself. The guilt because we’re failing our child and we’re failing as parents. The stress it puts on our family and our marriage. The shame we’re made to feel because all the judgement comes back on us as parents—who by the way should have it all together as soon as their child is born.

God has slowly, but surely guided us each step to get to where we are right now, even to the diagnosis. His diagnosis was not surprising to us, but still bittersweet. There is tremendous relief because we finally have an answer for his struggles; we finally feel like maybe—just maybe—we found the door into his world. There is burden because of his future. There is an overwhelming feeling because of the huge responsibility and difficult path that lies ahead. And we brace ourselves for all the judgments and shame coming our way.

Now that you know, he will likely be watched even more closely, every action and behavior of his—and ours. We will hear (which I already have): “I just don’t see it”! Autism doesn’t present outward deformities. Often the only thing seen to outsiders is their behavior, which can sometimes be misjudged for disobedience. When you see our son once a week (or even longer in between), don’t base everything on it. Autistic kids can appear quite typical in short spurts of time and depending on the situation. And they too have strengths and weaknesses, the same as everyone else.

Forget the stereotype most have about Autism. There is no mold. It’s not limited to hand flapping, awkwardness, anti-socialistic tendencies nor the inability to verbalize. It’s a spectrum. Within the spectrum are extremes, and everything in between. It’s true there are characteristics which can define Autism, but factor in even just their unique personality and it looks different in each child.

If you’ve met one individual with Autism, you’ve met one individual with Autism.
–Stephen M. Shore

As you witness my son running around, unable to settle himself or gain control over his body, don’t conclude he’s never disciplined. You have no idea how difficult it must be for him to struggle through it.

Because our son is throwing a tantrum doesn’t necessarily mean he didn’t get what he wanted. Perhaps it’s because he needs something from me but doesn’t know how to express it in words. Or perhaps the world is overwhelming him right now and his nervous system just overloaded and crashed.

And just because he smiles at you and seems to like socializing, enjoys certain adults and socializes appropriately sometimes, doesn’t negate the diagnosis. Being an extrovert doesn’t make you not autistic.

Autism shouldn’t be a big, dark label smacked across his life. Our son is an amazing little boy—unique and special—created by God. He just sees and processes the world differently than most. Be patient with him even through his struggles, but also hold him to the same foundational standards (respectful, loving, kind, obedient)as everyone else. Just realize the method in which he reaches it might look different and it might take a little longer to get there. But he will.

Don’t assume we’re not trying simply because it takes longer for him to reach the same goals as other kids his age. He receives constant guidance all day long. Raising children is difficult. Please be patient as we feel our way through this unfamiliar journey. We want to be shown grace and mercy just as other parents would hope for.

Every day requires moment-by-moment dependency on the One who knows all things; casting our concerns and anxieties at His feet and leaning on His grace and mercy to get through; praying He gives us enough love and guidance to raise our three boys in a way that would honor and glorify Him.

At the end of the day our sons need to know they are loved by my husband and me, but above all by the Creator of all.

Psalm 139:13-16
For You formed my inward parts;
You knitted me together in my mother’s womb.
I praise You, for I am fearfully and wonderfully made.
Wonderful are You works; my soul knows it very well.
My frame was not hidden from You,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in Your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.

Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.
–Jim Sinclair

Bless those who see life through a different window and those who understand their view.

Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.
-–Paul Collins

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