Ezra,  Messy Faith,  Personal and Spiritual Ramblings,  Special Needs Parenting

Questions I’m asking about my son’s special needs

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When you ask hard questions, things get really messy. So, you’ve been warned.

“He’s just so mean,” she said to me last night. “I don’t know how you and Russ take it.”

In the moments, all I could say is, “Yeah, I know.” It isn’t until later that the words cut deep.

We are two months into Intensive In Home services for our 5 year old son who has behavioral diagnoses. I tell my best friends just yesterday, “We’ve seen some improvements, but not really as much as I’d hoped. And it’s not because they aren’t doing a good job. It’s just a hard situation. He’s always struggled and probably always will.” 

When we meet with them and go over how things are going, everything they tell us is pretty much old news at this point. We are utilizing behavioral therapy techniques both in home and about, just as we are supposed to. And some days, we really see improvements. Other days, not so much.

His lead therapist tells me probably once a week, “These behaviors weren’t learned overnight, so they aren’t going to be fixed overnight.”

Little Brother is so different. It’s probably a bad thing that I compare my children so much, but I can’t seem to help it. It’s not so much that he’s met his milestones earlier (although he has), but I see and sense something different in him. It’s a personal determination to do hard things, independence, and self-regulation. His strengths in these areas serve to highlight his brother’s deficits and I hate it for both of them.

For months I have grieved these differences and struggled to love them, just as they are, as separate individuals whose strengths and weaknesses have no bearing on those of their sibling’s. I think that, now, I’m out of that grieving stage and into stages of both partial acceptance and some really hard questioning.

Hard questions I have about my son's special needs

When I can put Little Brother in his crib with the pacifier, walk out of the room, and know he’ll probably put himself to sleep – maybe not every time, but a lot of times – and yet I still have to threaten consequences just to be able to leave Ezra’s room at night, I just breathe a heavy sigh and know it is what it is. One of my kids has the ability to self-soothe and the other one doesn’t.

Is this acceptance or simply resignation? 

I look at how far we’ve come. Some days it seems like there’s been so much improvement, and other days it feels like we are exactly where we started a few years ago. Still having the same fights, the same power struggles, the same…everything.

I’ve spent countless hours wondering how to fix it. Researched counselors, therapies, medications, techniques, schedules, and so much more. We have found that implementing these things is the ONLY way he’s learned to cope. But the slightest misstep, the times he is a half hour late for his medication, or the tiniest unexpected variation in his routine and he’s melting down.

The good days are the days when he has more good moments than bad ones, where he sleeps til seven instead of waking early or rousing in the middle of the night, where we can put him to bed and he doesn’t call us back ten times, where he eats his dinner without a fight. But it’s rare that all of those good moments happen on the same day.

I lurk in some Facebook groups where moms of children with autism speak out against those who search for a “cure.” They say we don’t need a cure, we need acceptance.

I wonder…is it wrong wish my son didn’t have ADHD and sensory issues? To wish that there was some cure that would help him self-regulate without jumping through what feels like five million therapeutic hoops every single day?

Then there’s a whole other group of moms who claim to have found that elusive cure for their children’s behavior. From restrictive diets to essential oils, the claims come. You just need to try…

Then I start to wonder if I’m really doing enough.

Then there’s God. And that just takes this mess to a whole new level. He says we are “fearfully and wonderfully made.” My best friend’s blog is centered on this verse and how God has taught her that her autistic son is beautifully, fearfully, wonderfully “AUSOME” – that God didn’t make any mistakes.

I don’t believe that Ezra is a mistake. But when I hear the results of his Brigance testing, that he has 7-year-old intellectual capabilities but only 3-year-old emotional and social capabilities and he’s TRAPPED in the body of an awkard 5-year-old whose sensory system is constantly on overdrive, I struggle not to ask, “What in the world went wrong here? Why, God, why?” 

I tell people about his Brigance results this way: “As hard as it is to mother him, I cannot imagine how hard it must be to actually BE him. It’s no wonder he’s so angry all the time.”

I remember how scared I was that he would die when his heart rate tanked for nearly seven minutes when I was in labor. Fetal distress can cause brain damage, right? Did something happen in those moments when his brain was at risk of being deprived of oxygen that caused him to have self-regulation and sleep issues from birth? Or is this just the “fearful and wonderful” way that God made him?

Is it wrong to want to see him overcome these things? Does that mean I don’t accept him for how God made him? How do I NOT wish that things could be easier for him? How do I not grieve his deficits for him?

A few weeks ago in church our Pastor was speaking through the passage in John 9 where Jesus encounters a man who is blind from birth.

And His disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he was born blind?”

Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him.

I find myself looking for life parallels. A child with a disability since birth. Questions about why. The answer of Jesus that there really is no good answer, but rather this is a situation to glorify God.

But Jesus healed this blind man. Is there healing for mental health challenges? Should we be asking for it? 

Is there something God is trying to work in our lives, in Ezra’s life, that I just can’t see? Something that will work out far more beautifully than if Ezra were neurotypical?

Or are we seeing improvements so slowly because we are trying to hard to fix it in our own power? Have we been so focused on therapies and strategies and missed some elusive spiritual lesson that God is trying to teach us about faith, prayer, and dependence? If so, does that make it our fault?

Am I supposed to stop trying to help my son and instead stand and pray for a miracle?

Then there are the questions about the behaviors themselves:

When he yells and screams, hits and kicks, calls us stupid or foolish – is it a sin problem or a mental health challenge? What if all those naysayers are right and we simply aren’t being firm and consistent enough?

Yesterday my husband asked him if he realized what he had done and said in a certain situation.

“No,” he replies. “Because I don’t have magic powers. I can’t do slow motion instant replay so I can go back and see how I behaved.” 

I smile at his choice of words, but I hear what he is really saying:

“My impulse control is so strong. I simply don’t know in the moment what I’m doing.” 

A few months ago I asked him WHY (for the love of God WHY?) he refuses to use his learned “coping skills” when he gets upset instead of having a meltdown.

“It’s just too fast, Mom. My brain just explodes into hundreds of little pieces, and I don’t have time to think.” 

Again and again he apologizes. “I’m sorry I was mean. I’m sorry I hit you. I’m sorry for all the sin-ness I did.” 

He knows right from wrong, but his brain can’t seem to access that information in the moment because of his poor impulse control. Can he be held accountable for his behavior when his brain literally processes too quickly to stop himself from doing the wrong thing? What is in his control to change and what isn’t?

What does (and what should) accepting and loving your special needs child look like? If I am resigned to the fact that he always has and probably always will struggle with self-regulation and poor impulse control, am I selling him short? Am I turning his diagnosis into an excuse? Is this just hopelessness talking?

Where is the line between “Whatever my lot Thou has taught me to say ‘It is well with my soul'” and “Whatever, it’s never gonna change so we just gotta deal with it.”

But if I expect (and demand) that he change, if I tell him that his behavior is completely inexcusable – mental health challenges or not – am I being unfair to him and his capabilities?

Probably the biggest question of all…

How do I love and accept him as he is supposed to be loved and accepted?

hard questions about special needs 1

And how do I love him as he is supposed to be loved when I am so exhausted of the fight? When I’m so depleted of the strength it takes to keep setting the hard boundaries (when he fights them every. single. time.), keep “being consistent” when the consistency seems to be for naught, and keep teaching right from wrong when he knows it but can’t seem to make it happen regardless?

I don’t have any good answers to these questions. I wish I did, but I don’t. So there isn’t really any way to conclude this post other than this:

I love my son. It’s imperfect. It’s messy. I probably fail at loving him well far more than I succeed, but I love him.

And I have to trust that God knows what He’s doing. One step at a time, one moment at a time, we will keep moving forward in a positive direction. And maybe, hopefully, someday–we will have some answers to these questions.

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  • Liz C

    I love how honest you are with your posts. This kind of transparency is real and relatable. Even though I don’t have a child with sensory issues, I felt your pain as a mother and your love for your children in this post. Thank you for sharing.

  • Robyn

    I think all mamas of special needs children go through these same questions. We all wonder if their needs are compounded by something we did or didn’t do. For me, I can’t change what’s in the past only look forward. I don’t know if my son will always have his deficits but he is making positive progress and all I can do is love him through it and pray for continuing progress, you know that it doesn’t stop. God is amazing and full of wonder and while I do what I can, I know if he becomes “typical” for lack of a better word, it will be nothing short of a miracle. You are doing a great job of loving your son especially when it’s the hardest, and that really is what’s so important. May God bless your family, and your efforts. Lots of love to you mama.

    • Aprille

      Thank you so much, Robyn. I so agree with all you said. I am quite a thinker and I believe that sometimes I get too lost in my own head looking for answers when I just need to put one foot in front of the other and keep moving forward. One thing that helps me is visualizing him graduating high school as a competent young adult. I truly believe that will be possible, it’s just SO hard to keep that in front of me in the day-to-day struggles.

  • Sierra

    I’ve never had to love a special needs child before, so I think this is one of the most helpful & insightful posts that I’ve read on you blog! Thank you for the insight!!

    • Aprille

      I’m so glad it was insightful. You never know when this information can come in handy as you deal with people in ministry or, not that I would ever wish this, in your own future parenting.

  • Ruth

    I just started reading your blog. I don’t know if you have written about this before. Have you looked into having him evaluated for autism? Asperger(although it’s not called that anymore). You seem to be very thorough in your quest to find answers. It’s just that my daughter was diagnosed SPD( sensory processing disorder) at a young age, but the autism was completely overlooked because she was on the higher end of the spectrum.

  • Kelly

    You are doing the right things. I had a really hard time spiritually when my son was at this stage as well, though some of that was coming from other things that were going on in life.

    Have any of your OTs talked about retained primitive reflexes. Both of my boys had them, and the Moro reflex, in particular, causes a lot of “fight or flight” responses that come up when SPD kids get angry and upset. We found that our OT didn’t completely address reflexes, but we had developmental vision evaluations for our kids that did find reflex issues (they also can cause eye motor problems). Anyway, they had vision therapy to address the eye motor issues, and that therapy targeted retained primitive reflexes. That, combined with a brushing protocol for my fight or flight kid, took away a lot of the big blow ups, and the ones we have are so much less difficult and less frequent.
    I’ve also heard VERY good things about these two books: The Explosive Child by Ross Greene, and Emotional Intensity in Gifted Students by Christine Fonseca.
    Best wishes. I really appreciate your blog and have shared it with many people.

    • Aprille

      No, the “retained primitive reflexes” issue is totally new to me, but does make some sense. What brushing protocol do you use? We have tried, off and on (rather inconsistently), but he’s very ticklish and it turns into a tickling/giggling event. Any thoughts on that?

  • Amanda Hill

    I work with children with different diagnoses. This post gave me chill bumps…in a good way. It was so honest. I work with families in their homes but I still question what it must be like to have to consider differences day in and out.

  • Jessica

    I have a kiddo who has struggled with many of the same things it seems. There is a book that changes the way I view everything regarding my son and myself as a parent raising a child with special needs. The book is “Not What I Expected: Help and Hope for Parents of Atypical Children” by Rita Eichenstein PhD. It seriously was life changing for me. Instead of tirelessly searching for solutions I’ve learned to accept my son as he is. I feel like through acceptance, I am able to see the changes I can make as a parent, and be okay with that. I cannot take away all of his struggles, but I myself can be prepared to catch him when he needs me. I can only change myself and not him. Though true, by changing the way I parent, it has indirectly changed him in many ways. I accepted his asynchronous development, sensory issues, and behavioral issues. I stopped comparing him to other kids his age and stopped reading forums about gifted kids, ADHD, and autism and learned to enjoy him, just him. His defiant behaviors have been decreasing over time. I think that this is because he feels I truly understand him. We still have consequences for when stuff gets tough, but we have to put them in place a lot less these days.

  • Blossom

    I know a family who have a child with ADHD (she is now an adult). They had an “expert” visit them at home (no appt. arranged) and was telling the parents various things to try which were methods they have already be advised of and had tried. It the end the Dad asked the guy where he got his ideas from – guess what – lectures at university. He didn’t have any children not did he have contact with any children at all. In the end the Dad told the guy that when he could come up with some proven information to contact them. Needless to say they were never contacted. He also told the guy to make an appt time next time, that if he hadn’t been home he would not have been let in. He said he had to be let in because he had ID. The Mum would not have answered the door “after dark” . The Dad’s theory was who was to say it wasn’t stolen or fake ID. Police have numbers on their uniforms so you can always make a phone call to verify ID.

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