I get it. Your stares, dirty looks, head shakes and even sometimes your “advice” may seem appropriate to you. Because we have the child who’s screaming uncontrollably, throwing themselves to the ground and not listening – we are the un-appropriate ones. We’re the “bad parents”. We’re the parents who have the “undisciplined” child. I could go on for a long time about what I KNOW some individuals perceive me and my child as. But let me bring to your attention some of the things that may not go through your mind when you see my child running from me through the parking lot…
I’m sure your multitasking skills are on point, and maybe they’re not – but you can at least attempt to multitask without feeling as though your brain is going to split in half. Do you ever get so overwhelmed with just one simple, every day question? Say, perhaps, “What would you like for breakfast”? So overwhelmed that if someone even dare ask you a second question without replying to the initial question first, the entire process starts over? The time it takes for you to process 20 simple commands or questions, it may take my child the same for one. Sometimes even longer. Patience is a virtue. Have you ever heard that? Well, us special needs Moms, we get it. SO, because we can remain calm through our child not answering us (or ignoring us in your view), I’m sure you can too.
Let’s get something straight – I don’t “whoop” my child. Special needs or not, a good hard talking to is going to go a lot further than a hand or belt to the behind. And I don’t mean a threatening, “I’m, gonna whoop you” chat. I mean a caring, sincere explanation. I discipline my way, you discipline yours. If you’re going to tell me my child needs a “good whooping” than you have more than likely received one too many in your day – go on your way.
Those restaurant booths are super comfy. At least usually, compared to the tables with the uncomfortable, armless chairs. Regardless, it’s easy for you to enjoy a nice meal out. Who doesn’t like going out to eat? Unless you’re unfortunate enough to get sat next to a table with a kid that can’t be quiet or sit still – what could be worse? – When you walk into a restaurant you may hear some clanking of dishes, people conversing and maybe some background music…but that’s easily ignorable when you approach the hostess to be seated. What you don’t hear with your un-heightened senses, or are maybe just able to drown out with your conversation to the hostess and your party, are the footsteps of others, doors shutting, and every single person’s individual voice in the lobby – on top of every other noise around. What is one to do with all of that coming in and no outlet or vocabulary to release it? High pitched screams, barking and clapping are a few that come to my mind. The actual dining room is another ball game. It’s much quieter than the lobby. Problem is, there are just as many noises to absorb. So either my child is annoying by exercising his senses that are raging throughout his body or a nuisance for roaming around our table trying to escape some of them – completely in his own world. His actions are not due to us as parents “not making him listen” but a natural reaction to what his body needs to do. So are we to never bring him out to eat because he may annoy or be a nuisance to others trying to enjoy their dinner? That is why they are called “family” restaurants. And just like every person, every family is unique in their own way. Have you ever heard that? I have. If you get annoyed by children, special needs or not, at a family restaurant, maybe you should be the one eating at home.
Anxiety may be a little more widely understood. That nervous feeling right before meeting a client, going on your first date…that nauseous feeling in the pit of your stomach right before that dreadful speech. There are certain things in everyone’s life that triggers it. But what if you had that feeling with every transition you had to make throughout the day? Such as – getting dressed, getting in/out of the car, walking across the street, walking into a room. Do you ever rock when you get nervous or anxious? Just that slight tap of the foot, or the leg shake? That’s called a stim. My back hurts at times after a stressful day because of how tense I get. Imagine stimming all day long. No matter what you’re doing – leg shaking, biting your nails, cracking your knuckles…or in my son’s case – arm flapping, rocking, walking on his tiptoes, finger tapping, verbal noises, back arching – all day long. It’s hard to sleep at night after a stressful day, for anyone. But we often don’t feel that until well into our adult years – when the stress really hits. We have those things that we can’t help but think about when we lay down at night. But at 5 years old, 6, 7?
I lay next to my son at night and count his breaths. It can take him hours to fall asleep. As he lays and arches his back, moves his feet and holds his breath for 10-15 seconds at a time it’s impossible not to think about what he may be stressing about. Or can his body just not relax? I have to pretend I’m sleeping, get really close so he can hear my long, deep breaths and coach his breathing so he can fall asleep - So he can fall asleep and wake up the next day and do it all over again. All over again in his happy, perfect little world. Because despite all of the bullies, dirty looks and disgustingly inappropriate comments, he still always wears a smile. He still always laughs uncontrollably and he will still love unconditionally. We should all love unconditionally. Have you ever heard that? I have, and my son reminds me every single day.
My son, along with millions of others in the world get judged on a daily basis for the life they were handed. Us, as their parents get judged as well. Special needs children and adults struggle daily on simple life skills that a person of a higher IQ wouldn’t even think twice about. While you’re driving to work, completely groomed with your coffee in your hand, jamming to your favorite tunes or listening to your daily radio station, all within an hour or so of getting out of your bed, my son, even though waking at the same time, is most likely still trying to process if he is going to school or not - and if his routine doesn’t go EXACTLY as planned, he will start his day bursting into tears. Which, unfortunately happens a lot of mornings.
You cannot possibly fathom how every person you meet lives on a day-to-day basis. You don’t know all the struggles of other individuals. I can tell you something that you can be sure to know next time you come across a special needs child and find yourself taken aback – you do NOT know what they are going through. You do NOT know what we are going through. We do NOT want you to feel bad for us. We do NOT want your opinion or advice. If you don’t like what you see, turn your head. If you don’t have anything nice to say, don’t say anything at all. Have you ever heard that? I’m sure you have.
Update on Caleb!
Caleb, his sister (Isabella), his dog (Ranger) and I now live in Pennsylvania! Caleb was put back on anti-seizure meds not long after he was taken off of them at the age of four. He developed staring spells and another overnight EEG study showed temporal lobe epilepsy. Caleb also hit the point in his life that I was nervous and scared for. His weight and height both fell behind drastically - to the 0 percentile. Caleb's new endocrinologist in PA placed him on growth hormone and he has been doing awesome!! He started growth hormone early/mid of last year and has gained almost TEN lbs, a few inches to his height and grown FOUR shoe sizes!! Absolutely incredible! He is doing terrific in school - He just transferred from Life Skills to the Autism Support class and we're very excited for this new opportunity. He is set up with services in school and also at home through the amazing Barber National Institute and also a member of the Autism Society of NWPA. Despite all of his struggles, we continue to provide the love and support he needs and he thrives! Still the happiest most lovable human being on the planet! ;)