Saturday, April 4, 2015

A New Part To The Journey

There are a lot of doors open and a lot of love given to well-behaved, slightly precocious, somewhat outgoing children. You know the ones. The ones who know when to speak and when to sit looking adorable. The ones who will interact with strangers in appropriate and cute ways. The ones who are helpful and caring from birth.

There is a smaller but strong community of love surrounding children who have obvious physical disabilities or markers of more common, better known diagnoses. Perhaps these people have a family member or friend or person they worked with at some point and when they see one of these children their hearts are touched. There are some who have a kind of romanticized idea of what raising a child in this category would be like and so they are attracted to them.

But what if your child is none of the above? What if your child is the one who blurts out the wrong things at the wrong time? What if your child is the one who talks constantly about things that interest no one but them? What if your child is the one who neighborhood children hide from and whisper about behind his back? What if your child is the one who looks perfectly normal but the more time someone spends with them the more they realize there is something not quite right and they slowly withdraw until they are gone all together? What if your child is the annoying one, the rejected one, the lonely one? What if your child is the one to draw out the innate cruelty in the children around him? What if THAT is your child?

What if that is my child?

Damek is a beautiful, intelligent, verbose, big-hearted, loving boy. He is very aware of how people feel toward him. He is very sensitive to the vibes people put off. He is very sensitive to stimulation. It has been heartbreaking to have him come to me and tell me that a certain person doesn't like him and know that it is true because I have watched interactions and seen for myself how people will recoil from him and not know what to say. I want to make it better and I can't.

A year ago we received a diagnosis for Damek, Non-Verbal Learning Disorder. We had known for quite some time that there was something a bit different about Damek, that he was very unaware of social norms, that he was anxious, that he struggled to be able to connect with his peers and preferred to be with adults or much younger children even though he wanted very much to be liked and accepted by everyone. We knew it wasn't ADHD, were pretty sure it wasn't high functioning autism. We hoped it was just a high IQ, being gifted can mimic many of the same symptoms as these other diagnoses. We dragged our feet at getting him evaluated. For me, the thought of having all three of my kids labeled as different, less than, not average felt like too much. But eventually we knew we needed to figure out what was going on so we could give him the tools to succeed.

So we scheduled him for a multi-day evaluation. There was an IQ test, computer tests, object tests, observation, questionaires. And when it was all over we knew that Damek was extremely smart, 97th percentile on the IQ test, and that he was struggling with a learning disorder. When the psychologist sat down with us and explained what the learning disorder was and how it manifests itself there was a certain relief. 'Yes! That is Damek! That is absolutely accurate!' And there was a little grief. 'Yes, That is Damek. What does this mean?!'

It has been a journey just to come to an acceptance. I have a stack of books on my nightstand pertaining to raising a child with Non-Verbal Learning Disorder and I cannot get past the first few chapters. It all still seems so overwhelming. I know we will find joy in this journey as we have with the journeys we are on with our other two boys but it is hard to get started.

My prayer right now is that in putting this out there it would make people stop a moment and think before they judge a child or his parents when they see a child acting outside of the norm. That maybe it will help someone teach their child a bit of empathy and compassion and help them see that sometimes people are born with some extra hurdles they have to jump over. Don't we all deal with difficulties? How can we help each other through them rather than making them harder by hard hearts and cruel words?

I'm just a mama, crying softly as she types this, hoping for a little more love, a little more softness in the world.


  1. that is so interesting!
    i was kinda drawn to damek because he reminded me so much of Brody (who, like his mama, has autism - aspergers. i dont refer to function. all humans function, even if its different, different doesnt mean "more" or "less".)

    Brody has all the same issues as you describe.

    how is nvld different from autism? though thats probably like asking me how autism is different from nvld? LOL

  2. ah. here we go. i might be going too simplistic, but apparently they are "technically" the same thing, diagnosed by two different perspectives.

    though, as a woman with autism, ill disagree with their "more boys than girls" idea. girls are out there, but we are trying to judge girls based on the behaviors of boys, and even in NT situations they are NOT the same. ;)

    for me, God did this on purpose. it is said that thomas jefferson was autistic. if he werent, and had more interest in socializing, would we have light bulbs?
    socially, i cant think of a lot of good times, or good people. there are very few willing to let me be crazy and intense and take on my "all in" style of friendship. most of the time people go running in the other direction, still, as an adult.
    but personally, i am so blessed God chose me for this. if i were more social, would i be as accepting of my son's autism? if i were more social, would i be able to handle homeschooling in such a remote area with few friends and few homeschooling groups? who would i be without autism? i dont know. God didnt make any mistakes on me, or Brody, or Damek. or any of your boys. or you as their mom.

    its ok to be overwhelmed. just know that you only have to worry about today. tomorrow worry about tomorrow. "how to raise a kid with ...." is too broad for me. i just need to know how to not get overwhelmed today to deal today. and then tomorrow ill worry about not getting overwhelmed for that day. every day is overwhelming with aspergers/autism, and i have double because i have Brody's too. and Bonnie to keep track of.

    i dont know if you're going to get anything out of all this. i just want to say you will do just fine raising him because you already are. Damek is a fine kid. hes intense. so is Brody. he gets rejected. so does Brody. but our kids know GOD loves them. sometimes i would like Brody to be able to have friends, and he is so outgoing and social that he would too. but if he were concentrating on that all the time, would he be able to always keep his head grounded in God's word? would he be able to handle the peer pressure? that was the worst for me. most of the time i was so naive i didnt understand what the other kids were doing. but i did know i was rejected. but, not being popular saved me from being offered a smoke, or worse. it saved me from getting myself into situations that i would have been too naive to avoid. i graduated a jaded, hurt kid, but as an adult im firm and headstrong and unwavering that God did it all for a purpose. Joseph was sold as a slave, and i was an outcast. Joseph became second only to Pharoah, and im the daughter of the King!

    1. *could you imagine going through this without God? i cant imagine our kids going through this without knowing God loves them and created them for a purpose, on purpose. thats the best part.

    2. Thanks for your comments, Ericka! I'm not sure what the differences are, though we have had multiple professionals tell us unequivocally that Damek does not have Asperger's/Autism. One source I read says that NLD is a little less symptomatic. I have no clue.

      I am so grateful for God's hand in all this, you are right!