So the past couple weeks haven’t been particularly easy. Mateo’s sleep patterns are out of wack – again. One night he’s up partying until almost 1 am – only to wake up at 5am. The next night he’s asleep by 8:30pm but up at 2:20am. I’m honestly not sure what each day AND night will bring.
Who needs sleep? Not Mateo…
Mateo has always had issues with sleep. This isn’t something new. We’ve been battling this from before he was two. He would either have a hard time falling asleep or more often that not, struggle to stay asleep. We’ve tried strict night time routines, Melatonin, massages, limited time on the iPad, medication, weighted blankets, blackout curtains, etc. etc. We’ve had some success over the years. At times, we can go months with a pretty regular sleep pattern, but then something will happen to throw Mateo off and we are back to waking at 1:30am or thereabouts and partying all night.
I’m not too sure what caused this new cycle of crazy sleep- or no sleep as the case may be. I just know it’s been really erratic. It takes a toll. It really does. It makes Mateo more irritable. It’s harder for him to focus and do school work. Me too! I’m definitely more irritable. My patience is down to zero and my productivity level is also way down. Averaging 3-4 hours of sleep is no fun.
SPD
So that’s why yesterday’s break through was particularly special. What break through you ask? Well, before I get into that, let me first tell you a little about one of Mateo’s OTHER diagnosis: Sensory Processing Disorder (SPD). SPD is a neurological disorder that affects how sensory information is processed and received. To make it easy to understand, people with SPD can either be Hyper/Over sensitive OR Hypo/Under sensitive to touch, taste, smell, noises, sight, plus a couple other senses they don’t really teach in elementary school that I won’t go into now.
This is VERY common with people on the spectrum. For example, a child who is under sensitive to touch might appear to feel no pain. But the same child might be hyper sensitive to noise and will cover his ears at loud sounds. So many of the stereotypical behaviors associated with autism – like covering the ears, not responding to certain sounds, not making eye contact, the need to flip or be upside down or the need to climb, or being a ‘picky’ eater – can actually be linked back to SPD.
Sensory Diet
Mateo, my consummate overachiever, has issues with basically all of his senses. It’s something we worked on A LOT with the help of an Occupational Therapist for years. One of our big problems was his under sensitivity to touch. This meant that he really didn’t feel pain like you or I would. He would cut himself and bleed. The only way we knew he was injured was by seeing a trail of blood across my living room floor. Once, at about 3 years of age, he burned himself on the BBQ grill. The only was we knew was that I found him sitting in a corner picking at the blisters, which were in a very clear grill pattern. It was like he was fascinated with the blister bubbles on his hand and wondering why they were there.
So to help with this, we had him on a sensory diet. Nope, this has nothing to do with food. Instead, it involved regular deep massages and brushing his skin. We learned how to safely apply deep pressure and squeezes to help calm him down. We regularly used ankle weights, a weighted vest and a weighted blanket. This was just part of his sensory diet.
Where hurts?
These issues, coupled with the fact that while he can communicate his basic needs via iPad, he still, at 13, is unable to tell me when something hurts. Think about it. I take him to the doctor and a doc will ask, does he have an ear ache? A stomach ache? How’s his throat? Who knows? I have no clue! Most times, Mateo will be cranky, aggressive, or have a major meltdown and it’s not until AFTER that he might spike a fever or puke that I realize the different behavior is because he was not feeling well. It’s one of the scariest and hardest things as a parent of a non-verbal severely autistic child. My child can’t tell me if something hurts. He could be suffering from chronic headaches or stomach aches and I have no clue. I have no clue.
Sigh.
But back to our mini-break through…
Yesterday, Mateo is out playing in the rain and mud puddles. He comes upstairs and heads to the bathroom. This is nothing new. He’ll strip and go straight to the shower to wash off. Only this time, I hear him opening drawers. I go peek to see what he’s up to, only to find the drawers in both bathrooms open and dug up. I immediately start getting upset at the mess (remember now, I’m on serious lack of sleep). Mateo comes to me and brings the liquid Band-Aid Antiseptic Wash (I’m not sure if you can buy in Belize as I brought this in my first aid kit. But if you can get, it’s great. It cleanses without as much pain as peroxide).
Teo stands in front of me, giving me the Antiseptic Wash. I take it, but now I’m confused. He’s never brought me this before. Moreover, while this doesn’t burn, Mateo still hates and fights me when I need to clean and treat one of his many cuts. I ask him, “Do you have a cut? Does something hurt?” He stares at me for a little while. I start looking around for blood. I don’t see any. So I ask again, “are you hurt?” This time, he sticks out what is hurting him. It’s not a cut, but it’s red and irritated. It really must be bothering him.
Communication is not always verbal…
He not only comes and shows me where hurts, but he also goes and gets what I usually use to treat cuts, burns, etc. This is HUGE! Remember this is not a kid who seeks out a kiss for a ‘boo boo’ or will even tell me when he’s bleeding. This is communication of more than just a basic need/want. We are now dealing with feelings! WOW.
I hurry to get some cream, then proceed to battle him to clean the area and put it on. Yes, the antiseptic doesn’t hurt much. Yes, in his way he asks for help to make it better. But, Mateo wouldn’t be Mateo, if he didn’t fight me to try to help him make it better. LOL. My kid.
So I’m tired. I’ve got no more than 2.5 hours sleep last night. Mateo is cranky. My brain is mush. Even with that, though, I still can’t help smiling at our progress this week. My son came and told me something hurts.
