Our oldest is adopted and is honestly one of the most beautiful human beings I have been privileged to know. He’s kind, sincere, thoughtful, empathetic, funny, giving, smart, hard working,creative, introspective, and just a cool person to know.
But he’s also severely misunderstood. He’s often socially awkward and sometimes kind of moody. He’s super sensitive. He cries and says hateful things when asked to do homework or if overstimulated.
He has struggled with school since the first day he stepped in to that kinder classroom. By the end of first grade we were confident that he had some sort of learning disorder. A few specialists later and he was seeing the OT each week for Sensory Integration Disorder, the PT for muscle strengthening, a speech therapist for his spelling delays, and a psychiatrist for ADHD. While many of these services were really helping him to “perform” more appropriately in the classroom setting they were not getting to the root of his non-specified learning disorder nor were they helping him relate to his peers or manage in loud, busy settings. As J got older and his peers got older the disparity between them became more and more obvious. His peers were reading Harry Potter at the bus stop while J was still looking at pictures in board books. His peers were running around playing competitive sports while J would play quietly alone in the sandbox. His peers would breeze through their sheet of homework each evening while J would take one to two hours to complete a simple homework assignment. His peers played and joked with other kids of the same age while J would gravitate toward younger kids. His peers would watch movies with more mature themes while J was still covering his ears and eyes during Winnie the Pooh. His peers were helping their moms with grocery lists in the store while J would lean against the shelves, climb in to the small space under the cart, or simply lie down on the grocery store floor.
This is still the story of J. A bright kid with a lot of great to offer the world but a kid who is beginning to see the disparities, who is beginning to hear and understand the harsh teasings of others, a kid who is invited to playdates mostly with kids who are 2 to 3 years his junior. J, the kid who still cries every time a piece of homework is set in front of him and the kid who is slowly beginning to believe that he might actually be stupid.
Because of these struggles I have fought hard to get him the therapies and specialists and support that he needs. I’ve fought to put the right people in place to help him be the best J that he can be. It’s not that I need him to be any different. Because I don’t. I truly love him just as he is. Instead I fight for these services because I believe that for the sake of J’s self worth and for the sake of his happiness, he deserves answers and resolutions to the root issue(s) of his struggles.
As any parent of a special needs child knows, finding that root cause, unfortunately, is not a simple task nor is it for the faint of heart. Over the years we have spent more hours in doctor’s offices than I care to admit. We’ve invested in so many aids and tools to make his life more manageable. We’ve fought the school district(s) for IEPs and special services. We have researched schools and moved to Portland over Seattle because a slot at the perfect charter school for J became available. And once we moved to Portland I immediately got my two special needs boys on the schedule at the children’s neurodevelopment center. Something I had attempted in Tucson but ran in to dead end after dead end. Six months after our move to Portland we were scheduled up the wahoo with testing and therapies. At one point it was so overwhelming and taxing on me and J that I was ready to throw in the towel, move to Costa Rica, homeschool him and just let J manage his life going forward with the current coping skills he’s obtained. But something in me told me to hold on. A quietness in my being assured me that I was on the right path and that I needed to keep fighting. Keep being the voice that he needs. Fight the fight for him because he is not able.
One gift we were given this summer was the gift of his OT. She has a great skill for explaining things to me in a way that helps me really connect with J. A way in explaining things that makes me not only understand his struggles but allows me to completely empathize with where he’s at. Her explanations have allowed me to stop being annoyed at things that he does that I don’t fully understand. Instead of being irritated I see a boy who is working so hard and his brain is working over time for him to just keep him functioning. This is the way that she explained his Sensory Integration issue:
Amy, imagine it’s around 5pm and you are cooking dinner in your kitchen under a disco light with your radio blasting and while you are cooking dinner the smoke alarm starts to go off because the stove is smoking and three of your kids are screaming and the mailman is ringing the doorbell, and you are trying to talk with the Dr. on the phone, and the dog is barking at the sirens of the fire engine driving by and the neighbor’s car alarm is going off and you are just trying to not go out of your mind. J’s life is like that every waking hour of his day. His brain cannot process all the sights, sounds, smells, tastes, and touches the way a healthy brain can. Our brains naturally filter out what is not important to us at the moment. His brain doesn’t have that filter. Can you imagine how exhausting that must be? It’s no question that he is always leaning on you for support. It’s no question why he’s covering his ears. It’s no question why he seeks solitude. When he lies on the floor randomly or leans up against a wall or person, he is trying to ground himself. To get some sort of footing in a world that is loud and out of control.
Wow! That is a powerful way to describe his struggle and ding ding ding it all makes sense. In fact I have changed my attitude so much since she gifted me these words because all I see when I see my son now is a boy who is so beautiful and is so beautiful in spite of how difficult every moment is for him. So those who don’t know my son may think that my 10 year old is rude because he’s always touching you or because when there’s too much stimulation he stops responding or doesn’t look you in the eye. You may judge me that I haven’t taught him manners because he’s always chewing gum to calm his anxiety or because I let him sleep where he needs to sleep (even if that place is my bed). But I, on the other hand, see nothing more than a boy who needs me to go to bat for him, needs me to find the best tools to calm him, and needs me to educate those in his circles who are unaware of his circumstances. That is the gift of my job. My job as his mom is to be more than his cheerleader. It’s to be his voice when he can’t find his.
Enter the second moment of hope. Last week and this morning J saw a behavioral optometrist to test his vision and to see how his brain is communicating with his eyes. An hour in to last week’s test the optometrist pulled me in to his office and said that without a doubt J’s learning disorder has to do with the fact that his eyes are not tracking as they should. He told me what a smart kid he was but that while his vision is perfect there is a breakdown in communication between the eyes and the brain which would make reading and writing extremely difficult and exhausting. Difficult enough to make a full grown adult quit trying.
At those words I just began to cry (as I am now). I began to cry because we’ve been searching for answers for years now and we finally had some. With answers comes hope. And direction. Not aimless ticking off of boxes in search of something.
This morning he continued his testing to pinpoint exactly what eye therapies he would be needing. They tested his eyes on all sorts of cools machines and computers. They tested his reading ability and I could watch on a computer screen to see how often his eyes lost their place or tracked back over words. They tested for dyslexia as well. With every test I got a better understanding and a deeper empathy of this wonderful child that I have been gifted to raise. The therapist left me with,
There’s absolutely no doubt that J is going to benefit from therapy. 12 weeks of training those brain and eye muscles to communicate and he should jump grade levels ahead in his reading and writing skills. In 2 to 3 weeks I’ll send you a detailed report of our findings and a therapy schedule. He’s going to be a whole new kid.
Once more I cried. Again not because I need him to be different but because we were now on a clear path to making life easier for him. J asked me why I was crying and I told him that all this testing paid off. All his hard work had led to this answer. He smiled real big, put his hand in mine and replied,
I knew I wasn’t dumb, Mom. I knew it. I was starting to think that I was but I’m so happy to know that I’m not and that I wasn’t lying to myself because I always believed I was working hard even when people told me I was lazy. Today’s a good day, Mom. Thank you for taking me to these appointments. I’m kind of excited.
Heart melted. Yeah, every moment has been worth hearing those words. Every painful moment has been worth gaining the deep level of respect and empathy I have for this child. I will never EVER stop helping him to reach his greatest potential. And he will never stop teaching me to see the beauty in each and every human being.
Thank you, J, for the gift that you give me each day. I am forever grateful and I am super excited to see you take this next journey. Maybe soon you’ll be reading this blog without any difficulty and maybe soon after that you’ll even want to write an entry! I am hopeful for the first time in so many years and I know you are too.
Journey on, Readers. Journey on.
- When oppositionality and learning disorders don’t play nicely (threestairsteps.wordpress.com)
- Visual Reading Disorders (woodfordvision.wordpress.com)
- The Positive & Negative Sides of Learning Disorders (creativityonthecusp.wordpress.com)