Special Needs

J, my six-year old son that is all heart, is going to be officially assessed and diagnosed for his emotional/behavioral issues. 

I wanted it to be ‘just a stage’… Just a stage that has lasted since he was 18 months old. 

That’s when J started having seizures. And after a 24-HR inpatient EEG, and MRI, at 2 years old, we thought we were in the clear. J was given a clean bill of health by one of the best pediatric neurologists in the state. And the seizures stopped.

But the screaming fits worsened.

At the age of 4 years, our long-time Pediatrician told us that the next step was a referral to a psychiatrist. There was nothing physically wrong with J. And while it wasn’t entirely out of the norm for a kid his age to scream and rage… my husband and I knew something was off with J. However, we didn’t think it warranted bringing our four year old son to a psychiatrist. Thankfully, our Pediatrician agreed.

My hubby and I were ‘behavioral management specialists’ for several years before J came into the world. There was little, as far as juvenile psychopathologies go, that we hadn’t seen and found ways to deal with in our line of work. It’s the only reason we haven’t pursued outside interventions before now– there was nothing new J could throw at us (Quite literally).Hubby even has a certification in childhood autism interventions. J has no idea how lucky he is to have parents that do not fear his inability to control his frustration. 

We have always been cautious about having labels slapped onto our kiddos. There are those parents that can’t wait to list all the diagnoses their children have collected…and  I find that abhorrent. No child should grow up thinking of themselves as a series of acronyms. If that’s how your Mom introduces you to new people, then that’s exactly how you will see yourself. 

But at some point, labels can be helpful. And, I think we are at that point. Because J is hardest on himself. He knows how he wants to behave. He just… Can’t. He’s at an age where a diagnosis– a label– can help him better understand his own limits. It’s pretty obvious to us now, this is something rooted in his neural makeup. It’s something that is going to shape him and mold him well into his teenage years (Maybe throughout his whole life). 

I was hoping it was just a developmental quirk. A stage.

We have a pretty good idea what J’s assessment will turn up. It’s why we decided it’s time to seek outside assistance. J is beginning to demand more than either of us are qualified to provide on our own. That’s a difficult truth to admit. No parent enjoys coming to this point. 

My hope for J is that a diagnosis will help him empathize with himself. That is my prayer for him too. J is the most self-less, empathic, generous child I have ever met. He wears his heart on his sleeve. Which is why it’s so hard for me to see him as disordered. He has a pure and gentle heart– A kindness in his soul. 

It’s his brain that is causing him trouble. And that is something I don’t know how to mend. 

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17 thoughts on “Special Needs

      1. Thank you, Lesa. I don’t feel very strong right now… But, I know God is strong enough to carry us all. I’m fine bearing my own cross, but it’s heartbreaking to see your child having to carry one of his own:-/

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  1. Mental disorders are so much harder for people to understand and cope with. I was talking with Windy the other day, and I realized something myself:

    If you were missing a hand, and were tasked with putting your pants on, it would take you longer than someone with both of their hands. It would be tough, but you could do it. It just takes longer. No one would bat an eye. Of course it takes longer. That’s common sense.

    The problem with society as a whole is that we don’t afford people with mental disorders the same understanding. If someone can’t function normally in a given situation, we simply don’t allow them to struggle because we can’t see the disorder. We can’t see that they aren’t whole.

    But they aren’t. Identifying and accepting that is difficult, but necessary. It’s a hard road. I’m sorry.

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  2. Kristen, my heart hurts with you. It’s so hard for us as parents, spouses, etc. not be able to supply what is needed for a member of our own family. Your situation is different than mine was, but I can relate.

    Instead of trying to supply something really helpful for you in this comment, which would be cheeky on my part, let me offer this. You and your husband are probably doing better in helping your son than you realize. Stability, love and honest communications are on your side.

    Thank you for sharing your burden with us. I only wish I was there to help.

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  3. Good luck, it must be so hard. Hope all gets figured out soon. Once we know what we are dealing with it becomes relatively easy as the next steps to follow are clearer. You are stronger than you think!

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  4. Kristen, I know what a long struggle this has been and so many of the efforts you’ve made. One thing that struck me in your description was your seeming juxtaposition (love the word and concept) of his heart behavior and his brain behavior….What if it is not in one in opposition of the other but sides of the same coin? I’ve been trying to look at things in this light recently in a variety of situations. such as, love and hate are not necessarily opposites, they are both strong passions, passion and apathy would be opposites….as an example. What if his ultra-loving behavior and uncontrolled rage behavior are part of the same thing? What if blunting one blunts both? I’m not saying this is even a possibility as I don’t know the situation, just one more )of a myriad) thing to think of….Kim

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    1. Ok, I can see clearly that J has us all surpassed as far as spiritual maturity (yes, my 6 yo has been known to correct my own heart at times.) And, reflecting on the fact that my own struggle to live in this world has increased in its tangible quality with each leap in my understanding of God… Hmmm… Yup. Gonna pray on this.
      Kim, thank you for sharing your intuitive wisdom.

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  5. I have two kids with “special needs”. My oldest who is 17 was labeled as a 10 year old with high functioning autism, but later revised to Aspergers as well as having a learning disability and ADD (no hyperactivity). She’s pretty much blown me away with not sticking to those labels. She now seems like she is just dealing with social anxiety.

    My son has sensory processing disorder and I hope you will look that up! I’m not saying he has that, but most kids on the spectrum or with ADD/ADHD tend to have sensory issues. The screaming might account for this. Their nervous systems just can’t handle our over sensory world. My son hates food textures, heights, scratchy clothes and can’t sit still to save his life. He cries at loud noises too. He also has anxiety about other things. Where one ends and the other begins, I have no idea. I did do Occupational therapy with both of my kids for a time, but now I just try to use coping techniques. If I know we are going to have to sit in a long service, I bring things to help Caleb sit still. If I notice Naomi rocking back and forth, I will gently tap her shoulder so she knows she’s doing it. We’ve just learned to adapt to it. I have come to the conclusion that I really don’t care if they are normal. There are so many beautiful things about them.

    The label was helpful in me having grace for them and not thinking it was some behavioral issue–it helped to look at it as a struggle instead of something they were doing to me. A lot of parents think I should “get my kid under control” but what do they know? It’s not like he’s banging his head against walls or anything. He just struggles to sit in a seat for more than 10 minutes. He’s also a boy! We don’t have the screaming issues, but when my son was a baby, he would cry and cry and cry. I later found out he hated his feet dangling. He wanted to feel like he was on solid ground. And so I’d put him in a shopping cart of something and he’d just cry his eyes out. That’s a sensory issue. Now he is climbing on walls and jumping off of them. Even with a label, they surprise us–they don’t always stick to some scripted label and diagnosis. They sometimes do things not expected and it’s really awesome to be there and see them grow and change and not stick to some devastating thing. I hope that for your son too.

    Hang in there. I know it’s hard. But he has you and his dad and you sound like you love him to tears and honestly, that’s so much!!

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  6. As a mom of 4, 2 who have special needs, I can tell you in all honesty that whatever you do for your son is the best decision for your son. Don’t second guess the decisions that you and your husband make. Trust that the same God who takes care of us in all situations will take care of you in this situation as well. We have walked the road of diagnoses and testing, etc., and while it can be exhausting it turned out to be a huge blessing for us. Now we can get our sons the help that they need…the level of expertise past what we can provide. And through my trials, I think I have stumbled upon my ministry. I would love to share more with you if you’d like…just about simple things come after diagnosis is complete. How/what did we share with our boys? What do they know and understand about their own situations? I’m here if you need the support! Thanks for sharing!

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