Category: kids

Make it Autism Acceptance Month


My son was diagnosed with Autistic Spectrum Disorder at 3 and the Month of April is celebrated as Autism Awareness Month here. There has been a push, that I have known about, for the last 2 years for more acceptance than awareness and a movement to stop leaving autistic voices out of the conversation of how to help those with ASD.

I remember the beginning of our journey as a time of intense confusion and feelings of inadequacy because many people told me nothing was different and strange or wrong about my son, but my Mama Gut was screaming he needed help that I didn’t know how to provide and I was desperate for help from the constant emotional and physical struggle of caring for him. When I got the diagnosis, I felt some relief, the relief many talk of. You know, now there is a ‘thing’, it isn’t all in my head and now I can go out there and find help for him.

There were many naysayers still in our lives who didn’t believe the doctors or me and insisted if I just – insert discipline or schedule here – we wouldn’t be having any trouble with him at all. It took even more time to educate those people as I educated myself and then to stop giving space to those voices as I learned they weren’t helping me and didn’t take my hard won education to heart anyway. I look back and know that I could have done many things differently, even those things I was assured were helpful and beneficial to a child on the spectrum. I pray that I haven’t done irreversible damage with misinformation and that when he understands or remembers, he will find it in his giving heart to forgive me my ignorance. 

These days, many people ask me what I did, how did I know, what helped, where to go, what to say, like I am the resident local mom on the subject. I am grateful they feel our  journey has spoken to them, but I am quick to remind them that every child is different, be wary of Applied Behavior Therapy and Autism Speaks. Remember your struggle is as valid as the next family’s and find someone you can talk freely with about the highs and lows of traversing this new road you find yourself on. Know that if your child is non-verbal it doesn’t mean they don’t hear you or have nothing to say. Remember if your child is verbose, it doesn’t mean they aren’t struggling with other things, don’t need your voice to help speak to the world. Know that you can read all the websites and books and still need to pray and look at your situation to make the best available choice and if that choice doesn’t seem to be working, SPEAK UP, and try something else. Listen to your own intuition and listen to your child. 

Today I can still see the loving heart that struggles in a world not always accepting of him. I can see the hard work he puts in to learn what most of the neurodiverse population expects when he is interacting with them. I also work hard to remind him that he is PERFECT AS IS. He thinks differently and that is beautiful and shows all of us another way to think about things. I let him know I see his work, his struggle, that though we butt heads over trivial and important things, I am always in his corner with love. I tell him how I don’t think his core needs to change, only that he needs to be aware the way you have to be aware of other cars and traffic laws on the road. I tell him, he can do this, he is worth it all. I ACCEPT him, as he is. Won’t you learn to accept those different than you too?

Way To Go, #1 Son

Working on crossing the midline of his brain while playing ball

My son works really hard to master simple things that come naturally to most of us. He doesn’t always get my epically wicked sarcasm or jokes or remember to do things we all do daily. His difficulties make him anxious and that anxiety makes him lash out physically in an attempt to control a world that often feels alien to him. Since we started this diagnostic path when he was 3, he has come a long way. Many people like to say that I and my husband have done such a great job, but that isn’t true. I may search for the therapists and doctors and school curriculum, but he does all the heavy lifting. I remember feeling unlike others as a child too, I mean exactly why was what they found fun so boring to me? I can only imagine this feeling is multiplied infinitely for him in trying to navigate a world that tells him he is too different, he must change, he is weird and strange and makes way too much noise for the other civilized people. Every time he gets up, he has to try and remember what he is supposed to do while his brain is thinking about a thousand other things, he has to find the right combination of shirt, shorts, and socks that not only do this strange thing his parents call ‘matching’ they must also not have any large seams or tags or just feel too itchy to wear. He then surrounds himself in items he has specially chosen that makes him feel strong and hidden simultaneously. The oversized jacket, shades and scarf effectively shield him from a world he barely understands. 

 He also has a huge heart that wants to be friends with everyone and never understands why someone he just met at the monkey bars doesn’t want to play with him or calls him “weird” and kicks him when he just wants to run around and have fun together. You may think this is an extreme example, I assure it just happened a few days ago, to my 9 year old who just wants us all to have free video games and play well together. He is scary intelligent and often solves problems by saying “there is no spoon” (See The Matrix for this reference). He shocks me often with his thoughts and ideas. I have always wanted him to reach his potential and be happy. I work tirelessly learning new techniques and therapies to help him learn what comes instinctively to most of us. It isn’t always fun, I often feel alone and beaten up and so far beyond my depth of understanding that I am doing more harm than good. But I get up everyday and try again, because I am giving him the best I possibly can, in the same way my family gave me all they could to improve and enhance my life.

He is in therapy 3 hours a week in order to help him meet your expectations in social situations and to improve his small motor skills, writing, and short term memory. I often watch him in therapy and prayerfully thank God for the ability to help him. Not all families have an easy time getting the help they need of their kids, not medically or emotionally. They can’t get insurance coverage or their area doesn’t have any supportive help available. Our hometown world is full of help, we have insurance coverage, and are surrounded by people who love him and support us. I pray that all who need help in whatever their journey is, they will still be able to get it as our government wrestles with the enormous responsibility of deciding who and how to help. No man gets ahead alone and may we all remember that. 

My son works hard at therapy, at school, even at play and maybe I need to remember the work he accomplishes in addition to many deserves to be recognized and rewarded. I love you son, just the way you are, keep being caring and weird because you just wouldn’t be as much fun if you were different!

Summer Fun, Are You Having Any?


So here we are, while there is still a month until the calendar says summer has arrived, here in Central Florida the 75 days of summer break have arrived. I love those posts about how those of us who came of age in the bygone era of the ’70s and ’80s spent copious amounts of unscheduled and unsupervised time outside. They talk about how we made up our own games, rode our bikes, walked the neighborhoods looking for our friends, and drank from water hoses. We went away to sleep away camp and returned with crafted pot holders, camp fire stories and tales of the horror of being on kitchen duty. Did your summers as a child look like this? With some exceptions, many of mine did, and while I wish for similar experiences for my own children, I’m sure I am forgetting all kinds of problems and only thinking of the fun of freedom from schedules!

As a result of recognizing the overwhelming pattern of scheduling and over scheduling our lives in this day and age, I have spent the last few summers making sure there are limited amounts of must do items and lots of time for what do you feel like items. I would love to send the kids outside to make their own fun, but my kids make this difficult. One has developed an aversion to the sun (“It’s toooooooo hoooooot” he says) and the other has an aversion to being alone (“I want you to watch meeeee” she says)! What happened? When did they start to think I was in charge of their fun? It is all my fault and I am working to break the bad habit. Go entertain yourself, go find you own fun! So, I work on a here are things you can do, go do them and we will be accomplishing this scheduled item type of summer. The other thing I throw in are small school items to keep their growing brains from atrophy. The school items don’t always go over well, but hey, what kind of parent would I be if I didn’t upset the little darlings every once in a while?

So, think of us as we try to live peaceably over the 70 days of togetherness we have left. Let me know what kinds of activities you will be enjoying this summer.

Trying to Say Yes to No

What just happened? I am sitting in a room breathing hard like I ran a marathon, my 8 year old is screaming in his room and I just wanted to finish our homeschool day. As agreed. We agreed, but he exploded when it was time to stop playing video games. I mean full Hulk green anger over having to stop playing the game and finishing his math, which is mostly review at this point and a subject he does well with.

Backstory you say, okay, no problem. My son, X, is autistic. He has Autism Spectrum Disorder. Yes, he is what many term high functioning, and would have a diagnosis of Asperger’s Disorder if the Diagnostic and Statistical Manual – Fifth Addition ( DSM-V) hadn’t done away with that diagnosis. He has been diagnosed since the age of 3 and has made many strides, yet there is more to do. He is behaviorally behind many of his peers and socially awkward in that he doesn’t always know what is an appropriate response. Many times changing tasks can be arduous. This is why why we discuss our schedule, time frames, and what is expected. This often works, often I say, not always. Today I gave the patented parent countdown to task change. You know, where you say, ‘Okay sweet child o’ mine, we will be starting math in 10 minutes. You should wrap up your game and prepare for school time.’ (Do you hear the sarcasm written here?) Sweet child acknowledges the information, you know after you stand there for eternity then ask him does he understand? Five minutes later, you give the same spiel, only now he has 5 minutes and he repeats acknowledgement.

5, 4, 3, 2, 1…

‘Alright sweetie, time to get started, you may leave that game on because we won’t be long.’

Immediately there is screaming, foot stomping and a lot of ‘this isn’t fair, you hate me, why can’t I just have a few more minutes to see this update, you don’t understand’ along  with actual tears and spittle flying! I was proud of myself, I was calm through much of this, I repeated the request, I pointed out the feelings on his stress scale, I reminded him of his acknowledgement of the agreement, I was hitting all the buzz words used to help alleviate the stress of these situations and get the desired outcome. And then, I wasn’t. I was yelled at one too many times, I was given aggressive body language and hateful words and my heart broke, again, and I needed time to pick it up and put it back together before I could go on. X was sent to his room to calm down, Mommy was sent to her room to cry and put herself back together. She needed to remind her heart that her son loves her, has made vast improvement, doesn’t know how to express his frustration, and really feels strongly about changes. In this case, a video game was updating, that meant things were changing, by leaving before he could see these updates, he felt adrift in a sea of the unknown. You may feel adrift when you are at a party where you only know the host, X feels adrift when he has to leave things undone or unknown. He thinks that isn’t right. I think it isn’t always a big deal. Somehow we have to meet in the middle, we don’t always do it gracefully. Today, he had a hard time being okay with a no, you may not do that right now. Today, X could not say Yes to No.

How do you or your kids if you have any, handle saying Yes to No?