We have a Special Needs Child

This post has nothing at it's core to do with travel. Instead it's an admission of the deepest sorts. Something that Becky and I have been slowly admitting to ourselves first and now admitting it publicly.

Zander is not special needs. He had a tongue tie when he was born and struggles with speaking. But he's intelligent and his vocabulary has doubled in the last 3 months. We're monitoring his speech but not yet terribly concerned.

Thys and Josiah are normal boys. Wild at times, selfish and learning to be kind. Their struggles are age and gender appropriate. We struggle with them, but in a healthy parent/child way. I don't believe any parents who say they haven't stuggled with their child at some point. I believe any parent tries to improve a child's behavior which is against the will of the child and so there will be struggles. Yet this is all normal.

Alia.

Alia - Special Needs

My dear sweet Alia.

Our firstborn.

Our only girl.

Our handful.

I wrote about lessons I have learned from her but long before I wrote that post this post you are now reading had been discussed in the halls of Kortman parentdom. Perhaps knowing the background of the struggles we have with Alia it will make the post about the lessons learned from Alia more poignant.

Background

Alia's babyhood was pretty normal except for that we were on a big natural kick (and stayed so through all three of our bio kids, Zander was adopted in the years where we loosened the belt a bit on the natural/organic/no sugar lifestyle).

We didn't think anything was amiss when she started sucking her thumb at 4 months old. I started her on this kick by putting my finger in her mouth when she was an infant and teething... letting her suck on my finger. We figured this was better than a pacifier. But in the end getting comfort from a finger in the mouth perhaps led to a thumb sucker at age 8.  She needs so much comfort every part of every day that she sucks her thumb constantly. It's so mindless than when you ask her to stop she cannot.

She twirls her hair... and snaps it off. Repeatedly, and mindlessly ...any moment of the day that her hands aren't occupied.

She has difficulty with school work and often the simplest things for her to do become a 2 hour long battle between Alia and her teacher (who by the way has an amazing ability to make it so far with Alia and homeschooling!)

Motivation triggers for her change from day to day. Whereas for Josiah he wants to swim, play, eat, or play ipad games. Four simple rewards that work 90% of the time. Alia's rewards? Well what worked yesterday will not work today and might never work again. What worked for a week will for sure be done with to never be returned again.

The tip off to us was that school was so difficult for her and things were so emotional. Becky and I were discussing how difficult school and life with the kids was and we realized it wasn't Becky, it wasn't the boys, it was Alia, that if we pulled Alia out of the mix school was normal and parenting/life was stable and went as well as can be expected with a passel of boys.

However it wasn't her gender behaviors that were the issue, and it wasn't just how she interacted with Becky. It was good or bad days, good or bad hours, and frankly everything can change from good to terrible in minutes, but only sleep will reset the clock enough to bring about the good again.

Two very desperate for help parents accompanied her into the office of the marriage counselor that Becky and I were seeing. They had a child specalist who quickly saw the same behaviors that we noticed and then did some testing on Alia... it was amazing how the results pegged her like a T. Even now as we do more research about it we realize she has it, no doubt.

Alia Chloe Kortman

Diagnosis

What does she have? ADHD.

This is "so common" and simple to medicate to "fix" but if you haven't caught it by now Becky and I are far from normal and rarely choose the simple path. Instead we try to make the best choice which often times is the hardest choice. We as a philosophy rarely do pharmaceuticals and believe there are other "fixes" for ADHD. We also didn't fully realize the extent of it. At the time she was only a mild diagnosis of ADHD.

In middle school I had a friend who was on Ritalin. And it was obvious when he was on and when he was off, or when the pill wore off. But when I saw that effect in my own child I freaked out.

No we did not give her Ritalin.

Nope, we gave her nitrous oxide.

That's right, Nitrous... ya know laughing gas, it's a natural ADHD mellower.

Not.

Here's the story: she needed to get a cavity filled at the dentist and our dentist gives kids nitrous oxide to help take the edge off so they won't get anxious. We allowed it because we knew it's our dear sweet Alia who sometimes freaks out and cannot be consoled.

After that cavity was filled we brought her home and she was an incredible 8 year old, helping around the house, making supper, and generally responding like we've trained her to respond. This was so abnormal that we both noticed it right away. But upon reflection that night while comparing notes we both agreed that the life was sucked out of her. (Just like my friend from middle school). The essence, the spunk, the wild creative flow she has was not there. She was a robot. Doing as she was told, exactly as we would like, but without any joy.

We train our kiddos to obey, but not to be robots.

Our resolve to not medicate her grew dramatically with that situation.

Who am I to determine that I should change the chemical makeup of another person (even my own child) just because I don't like some of the outcomes... stripping her of all her creativity to fit into a mold our society appreciates and approves (meaning that in her current state, our society does not appreciate her or approve of her behavior).

Who am I to make that decision?

The Outcomes

Yeah we do unschooling right now. Will we do it forever? No, but seriously, trying to teach a child with normal levels of concentration and brain logic while living a lifestyle of travel is difficult enough on it's own. Add in the inability to concentrate with the (il)logic of a 2 year old and you're just asking for trouble.

She gets emotional about seeing others do better than her (read: Josiah passing her in a workbook or reading ability or swimming ability) and will lock down and refuse to move forward. Remember that bit about logic? It's almost as if she gets a bout of angry depression, curling into a ball wailing about how she's awful and can never do any good, etc.

We pack extra things for her. She needs two stuffed animals. (special exception to the rule of 1/child) She needs many more clothes than her brothers because she writes on her cloths, wipes food on her clothes, chews holes in her clothing, plays in the dirt or whatever... she's never being purposeful about it but sometimes she's mindless and doesn't realize (writing on herself, poking holes in her clothes). Often times she seems like she's just a 2 year old in a 8 year old's body (talking like a baby and throwing dirt in her hair, for example).

She's really hard on toys, clothes, and other physical products. So far since leaving home 3 months ago she's destroyed 4 pairs of sandals. Her new backpack is torn and she's destroyed 4 souvenirs she bought with her birthday money.

Becky and I are constantly at our wits end. We're looking to hire a nanny soon (Lord willing) and part of that is almost a respite care from Alia's constant needs. The other kids don't get near enough one on one attention or even a portionate amount of attention as typically one of us has to be working with Alia. The other three kids get one on 3 time.

Mind you she does have good days. There are so many triggers that switch from a good hour, moment, day into a bad day. Too many to count. So when we get a good day it's fantastic, celebration worthy. Despite the frequency of switching from good to bad there are rare moments when we have some one-on-one time where she does really well, where she is able to focus and where she can make great logical observations. However the moment we return from our outing, or the boys enter the room, or whatever causes her hair to go crossways she'll be wild, emotional and otherwise out of her own control.

AliaSpecial Needs

Insight into past struggles

Being diagnosed with mild ADHD didn't stop us in our tracks, we were surprised a bit, I mean ADHD is caused by eating sugar and caffeine right? But we're slowly coming around to admitting that she has special needs and our whole family is dramatically affected by her needs.

After acknowledging that she has ADHD and has it bad we've tried reflecting on Alia's life and we realized that even as a small child she struggled with emotional outbursts. She bit a dear friend while playing together around 2 years old. (We're still sorry for that Viktoria!)  In fact she struggled with biting others for over a year. We look back on that now and realize that was an initial sign of having emotional outbursts.

She cannot make or maintain friendships. Sometimes she has an emotional breakdown because she wants to spend time with a child she met once (or has yet to meet) saying they're such a deep friend and then it all changes after spending time together again. In fact Alia has no friends. It'll take someone special to become and stay Alia's best friend. I know this because my best friend in middle school (the one on Ritalin) was too much and we were only friends a short period of time.

Dancing is yet another thing. Alia is a good dancer, it's in her heart. Somehow despite my two dutch feet she has a natural talent and desire to dance (must get that grace from her Mom!).  However she needs training like any child with a gifting in anything. She wanted to take a ballet dance class so we enrolled her. And after one season she quit. She didn't want to do dance anymore. To this day we cannot get a good answer as to why. What I do know is she switched to soccer because Josiah was doing soccer. However she's not talented at soccer and her ADHD keeps her from even participating. She'll totally lose focus while out on the field. Suck her thumb and twist her hair. Yet she refuses to try another dance school.

Logic? Not there. Logic with Alia when she's in one of these moments? Not possible.

Movies, cartoons and villains

We thought we were raising sheltered children. By choice. We didn't (and don't ;) own a tv. Our kids don't watch Saturday morning cartoons, they don't watch movies or play video games. We're the type of parents who very purposefully limit our kids media intake.

But something that surprised us was their fear and reactions to villains. Kid's movies and cartoons try to make villains appear scary but it's obviously fake.

Obvious to you and I.

Not to Alia.

We used to think the hugely negative reactions to villains (in both Josiah and Alia) was because of the media lacking ("sheltered") early years. However Josiah has since grown out of it.

This has become very clear while we're traveling and choosing to introduce significantly more media to our kids.

Josiah eats it up. Even the emotional ones. (He's a boy so he likes the fighting and shooting scenes, but man did he ever cry (sob) his way through Pocahontas!)

So what are these terrible villains Alia cannot watch? (The ones that get so bad she leaves the room?)

  • Monsters Inc
  • Shrek
  • Pocahontas

Yup, that's right. My 8 year old cannot make it through a Disney or a Pixar movie. She leaves the room.

And it's not because of the poor moral messages. (No I only wished I could have taught my former 20-year-old-self that level of discernment!) Nope. She leaves the room because she's too scared of the villains. She's afraid that something bad is going to happen. She's afraid of what a cartoon character's angry face might mean.

Logic will not win. Emotion and fear grip her.

She is an 8 year old with the logic and emotional capacity of a 2 year old. During most days. However on those good days/hours she accelerates to that of an 8 year old and we marvel at how life would be incredibly different if only she could stay in that mindset.

Alia Flower Girl

Father's Day

My heart breaks for her.

I love her so much and I (like any parent) would give up anything for her if it meant a better life for her.

I realize this will be a lifelong challenge for her and for us. That Josiah will surpass her in school and emotional capacity. (Thys and Z might as well)  And that act of being surpassed will wreak emotional havoc for her.

And my heart breaks for her.

There are moments. Sometimes even hours where she's in control, creative, intelligent and properly emotive. I eat those times up!

I just wish they occurred every day.

In the "other" times I cling to the memories of the good moments as hope.

Hope that those moments will return again.

Yet my heart breaks for her.

On this the American Father's Day I wish to say to my daughter:

"Happy Father's Day, Alia.

I'm honored to be your dad.

I love you.

And I love that God blessed us with you!"

I just hope that she hears that message through the illogic she has.

Help?

We wrote this post not seeking help, but merely as an admission. Sharing our journey, our struggles. However, outside of shaming us for not medicating our child, we'd love to hear any thoughts, any encouragement, any tips, resources or just whatever else God places on your mind. Like all parents we'd love to overcome this "disease" and fix our daughter. However the hope of that fades as the reality of her special needs status sets in.

 

 

Please note: This post in no way seeks to minimize having a child who is physically or mentally disabled. Most parents of those with ADHD medicate for these difficulties and we have that choice before us as well. Therefore, we know we are choosing the pain we are experiencing. Plenty of parents of those with special needs cannot choose their difficulties. Becky and I both respect those parents and have no desire to minimize their experiences or frustrations.

Paul Kortman

Dad of 4, husband, blogger, digital marketer, follower of Jesus. I podcast at nomadtogether.com and own connexdigitalmarketing.com We're on this crazy journey to travel the world as a lifestyle. Looking for help in how to live as a digital nomad family? Join this Facebook Group!

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7 Comments

    • namtrok

      Nate, Wow what a great resource. We’ve got plans to incorporate this into our routine in a couple weeks! #hope

      Reply
  1. Amy Toornstra

    I read Nate’s article and I can relate to it a lot. I don’t think I have Adult ADHD though I do have some of the symptoms. I have struggled with anxiety and some of the prescribed medication is similar. I am not against medication–I think there are crossovers and correlations between physical and mental health. We treat the one so I believe we should treat the other. I know not everyone agrees with me, but after some trial and error, I found a medication that keeps my moods balanced and my anxiety limited…and also very little to no side effects. It has made a difference and makes me easier to be around–I, too, was having a negative affect on friends and family–possibly losing close friends. I have extended family members who are on it too and most of us “are wired” in a similar way. I’m also a huge advocate for counseling. Exercise like the article shares is SO important and necessary. I found running and triathlon training (I’ve run three marathons and done many smaller races and two triathlons) to be therapeutic. I workout six days a week. For me running is like cleaning house in your brain–you clear your mind and come back focused and ready to tackle work that needs to be done. I’m just beginning to bike, run, and swim with my kids. This is just my story but maybe it gives you some perspective.

    Reply
  2. A Living Heritage

    Also, if you have MTHFR they say to avoid or be very careful about getting nitrous oxide, they talk about it during the interview I linked to (below). I shared quite a few links, I think it may get put in a spam folder, just know that it’s not spam but helpful info. Bless you!

    Reply
    • namtrok

      I’m 99% sure she (nor us) have MTHFR. The results of the Nitrous Oxide were just a simple example. Thanks for your suggestions!

      Reply
  3. Amanda

    I just came across this blog while looking up “how to unschool a child with special needs.” My daughter is nine, internationally adopted at 5.5. I’ve been homeschooling her for nearly four years and am at the end of my rope. I nodded my head the whole time I read this. Granted, her situation is different with her struggles stemming from childhood trauma, but the results and behaviors are exactly what you’re describing. I just want to say I hear you, and I wish you all only the best. It is a HARD road, and I can hear your love for your daughter in every line you wrote. You are certainly not alone, and thank you for reminding me that I’m not alone in this either. God’s blessings on you and your family.

    Reply
    • Paul Kortman

      Thank You Amanda! Here’s hoping you find answers in your situation as well. We’ve found that unschooling is significantly less frustrating for Alia and for the parents :) In time she’ll catch up or surpass other kids her age in reading and other skills. I (as the father) just need to be very very patient!

      Reply

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