I know I’ve mentioned it before. We have really been struggling with sleep for quite a while. Again, last night seamus was up around 2:00am. This parenting gig isn’t always pretty, easy, and fun. It’s being over tired, it’s sleeping on your coffee table so your kid can be comfy, it’s watching the sun come up for the seventh time this week. It may be weird but there is something magical about having him asleep on my chest after we’ve been up most of the night. It may not be much but it’s a little victory. He got some rest and so did I.
Last night was a terrible night. Seamus went to bed around 8:30pm. He had a great day. I followed a few hours behind and settled in around 11pm. I just couldn’t shake the feeling that it was going to be an all nighter. I wasn’t wrong. Seamus strolled into our bedroom a few minutes after midnight. He was WIDE awake. He hadn’t even napped during the day. He got three and a half solid hours and he was ready to LIVE IT UP. So, we spent the night cuddled on the couch watching movies until the sun came up. He finally passed out on the living room floor at about 6:30am. I left him be until about 9:30am and he woke again on his own. Now we wait and see what tonight brings. Restful sleep or another night of torture? I’ll let you know how it goes.
Today definitely had its ups and downs. We started the morning off really well and went to the office to Trick or Treat and brought a batch of pumpkin muffins to share with friends. Seamus stopped to get candy and give hugs from the ladies at the front desk. All in all this was successful!
We spent the majority of the day at home. He had speech therapy and didn’t have much to say today. He just seemed off. Maybe it was the round one sugar coma that effected his performance. Regardless, he just wasn’t a good sport for it today. We got home and started making dinner and I made my first attempt and getting Seamus into some warmer clothes. It’s only 35ish degrees here this evening. Certainly too cold for a sweatshirt and leggings. We talked about it. I reminded him about how he got candy in his bucket this morning and that he could do that again tonight but he needed to be dressed warmly. Tears. Take a break. Again I reminded him about the potential for fun. Tears. Okay, let’s wait for Jeremy to get home. Maybe he can convince you it’s a good idea. We ate dinner, stuffed shells and garlic bread. Perfect on a cool night. Now it was Jeremy’s turn to attempt dressing the beast. We got his sweat pants on him while he was distracted. Next was his shoes. He’s a fan of his Lightning McQueen shoes so that wasn’t a problem. The third and final step. A Winter coat. The first time this year it’s really been cold enough to need one. He screamed. He screamed hard. He screamed so hard he puked. Twice. He miraculously missed his coat and shoes. He started to calm down and we heard a familiar voice out front. His friend Eli was prepping to go out with his family so we scooted across the street to say hi and get hugs. Thankfully he did ok from here. We got to go to a few houses close to home and he was pretty excited after he got going. At the end of the night I’d say we were as successful as we could expect to be. No costume. A few spots for goodies and a nice evening at home.
- When we think of making a transition it’s usually walking from the living room to the kitchen. Eating to watching tv. Some transitions are bigger though. Summer to Fall. Fall to Winter. One of the next big transitions for Seamus is a change in therapists. He’s been using Early Intervention for ages birth to three. Once he turns three we will be hitting the metaphorical reset button and starting over. Kids with autism struggle with transitioning from activity to activity. Hit the reset button on their schedule and you’re opening a door for all hell to break loose. Today we had one of our last speech sessions with his current therapist. We’re definitely going to miss seeing his current support system. They all genuinely care about these kids. It’s taken the better part of the year for him to get comfortable but he gives hugs and kisses and thanks his supporters before they leave. I’m nervous to start fresh. For now I suppose I’ll just sit back and watch the magic that happens between them for a few more weeks.
This is a peek into Autism that most people don’t see. Every child with Autism has Sensory Processing Disorder to one degree or another. It just so happens that Seamus is really struggling with being dressed. The big reason this is a problem is that it is now almost November and the snow will be flying SOON. He breaks down as soon as you start dressing him. I strategically buy clothes with his favorite characters and cozy materials. To him it feels like I’m scraping sandpaper up his legs. It’s uncomfortable. He cries. He fights. He kicks and hits me. The struggle is freaking real. He’s not just acting out because he’s a little jerk. His wiring is different and he sees and feels the world in a completely unique way. I want to fix this for him which is why he goes to sensory integration but in the mean time we struggle. My little prince feels EVERYTHING. It’s breaking my heart knowing I essentially have to torture him in clothing at the start of the day or we will literally be homebound all winter. Please keep him in your thoughts and let’s hope he can overcome this challenge soon.
Yesterday was an awesome day. Seamus did remarkably well with almost everything we did which made it even more special. As you know we have train wreck days where nothing can go right and we have almost serene days where for some reason things just work out okay.
Early in the morning we took Seamus out to Russell. This was actually weird for Jeremy because he had never actually dropped Seamus off with anyone other than family. I think he almost felt a little lost without the beast boy in the back seat blowing spit bubbles and making small talk on the way home. We got to go on a mini date for the first time in ages. It’s been at least a year. We packed up our supplies and went target shooting. I haven’t lost my touch either.
The parade downtown was our next big adventure. Seamus was going to be meeting us there. There was a small hiccup in getting him back to us and my amazing friend carried my forty pound kid about a mile because he was unconscious for the car ride to town. He was so excited to see us! He switched into my arms just in time to see the Zem Zem’s go by in their tiny cars. He loved it. WOW! COOL! He was so excited he was shaking with a big grin on his face. He watched several units go by and needed a break. Jeremy and Seamus took off into the parking lot at work and ran around for a few minutes and he came back for more. He lasted about an hour which was pretty good for him. He was getting overloaded so we hopped in the car and went home for lunch.
Phase three of our awesome day was just a walk in the woods. I brought a couple of tiny nets so we could try to catch some critters. Seamus was impressed by his met but caught a fine variety of rocks and nothing living. Jeremy built a little crayfish habitat by damming off a small section so Seamus could see our spoils. I nabbed about ten crayfish and Seamus was pretty impressed by them. The more exciting part was chucking big rocks into the deeper water. With each big splash Seamus would yell “oh, goodness!” several times over. It’s adorable. Jeremy can’t help but laugh when he says it. After we finished in the water we started walking further down the trail. Jeremy initiated a game of hide and seek. Seamus loves it when you jump out a make monster noises to scare him. Sometimes he even plays the role of the monster. We played almost the entire walk back to the car. It made our stroll take a lot longer but it certainly made it more entertaining for all of us.
The good days are absolutely amazing. The bad days make you want to bury your head in the sand. Today I was really wishing I was an ostrich.
Today was hard. It started at 2:30ish this morning when Seamus came into our bedroom ready to party. Crap. It’s not time for this yet. We should still be safe for another three hours… Okay, lets go down and sit on the couch. I turned on some cartoons and pushed the coffee table against the couch so Seamus wouldn’t accidentally fall off if he fell back to sleep and rolled. I covered my head and hoped to doze back to sleep. AT about 5:00am I woke up panicked. He wasn’t laying on my feet like he had been two hours earlier. Crap. Where did he go?!?! If you know me well you know I’m pretty much night blind (thanks, mom) so, I stumble back up the stairs and make it into my bedroom just to find Seamus back in my bed and snuggled in with Jeremy. That little jerk left me on the couch after a waking me up at 2:30am. At least he was accounted for. I stumbled back down the stairs and got to sleep until almost 6:00am before I left for my early morning walking date.
I got home a little after 7:30am and Seamus had an Appointment down at the hospital at 8:00am for Sensory Integration. He fights getting his shoes and socks on. Fights coming out of the house. Fights getting into the car, and again when we got to the hospital at 7:57 and he wanted to play cars in the back seat. His session went pretty well and his therapist seemed pretty pleased with how he did today. Time to go, and guess who doesn’t want to hold hand, be carried, or just walk on the sidewalk? Oh, that would be Seamus. He wanted to chase a bus down the road. I catch him and scoop him up in a weird hold I use when he fights. one arm between his legs and the other by his shoulder. My hands connect at his belly, his face pointed to the ground and he can’t kick or headbutt me from here.
We got home and did I managed to get a little housework done. He followed me from room to room dumping out toys and laundry just to make sure it would look like I hadn’t actually done anything today. We had a quick lunch, just leftovers. Then I had a few errands to run this afternoon and the first stop was scheduled for 2:30. I knew it was going to be a struggle so I started ushering Seamus towards the back door at 2:10. Unfortunately when he’s focused on what he is doing he acts like he can’t hear you. He wont acknowledge his name or look up. I set him on the coffee table and strapped on his light-up Velcro sneakers. He starts screeching. His feet are often tricky. He isn’t always welcoming to his shoes and socks. Crap. Okay, you can go in just your socks. Let’s go. We made our two stops and I thought maybe he could use a trip to the park and get some playground time. We pulled in at our favorite playground. I tell him he has to wear his shoes if he wants to go play. I slide on his fancy footwear and the screeching begins. Again. We were drawing attention to ourselves. People start giving you the look. The why can’t you control your kid look. I quickly pull him on and set him on the ground. I make sure he can see the playground and he immediately stops. The pleasure of the playground outweighs the irritation of having to wear shoes. He burned off a lot of energy at the park today. It was busy and there were kids ranging from about a year into their teens. Things were going beautifully until they weren’t. He convinced himself that he needed to get his hands on a big red ball a group of teenage girls were playing with. Here we go again. I scooped him up so he couldn’t fight me and we headed back for the car. He played for a little over an hour and thankfully it was enough so that when we got home he was content to settle in on the couch and relax with a snack. The magic hour was upon us. Lets go sit outside and wait for dad to come home. For some reason when the days are the worst something happens when Jeremy walks in the door after work. Maybe it’s because he’s not frustrated from the nine hour battle. The evening has gone smoothly and all I can hope for is that tomorrow will be better.
Everybody needs a support system to make parenting an experience you can survive. The necessity for support grows astronomically when your child isn’t neuro-typical. Several months ago Seamus and I were going to Tumble class at the local YMCA when we happened to meet life changing friends. Lindsay and Ethan have been perfect companion for Seamus and I. We’re all in the exact same boat. The really cool part about this is that the boys have all, yes, ALL of the same therapists! It’s actually uncanny if you think about it. We live in a very small community. Our kids have birthdays that are only twenty days apart. They really are peas and carrots. Destined to be buddies. I gained my Autism soul sister. Lindsay has helped me understand and accept that it is completely okay to be different and that our boys are really something special. I never dreamed that this would become our reality and she has been there for me every step of the way! Thank you, Lindsay for being there for me to vent, complain, and cry a little.
So, therapeutic play dates. You know those days when you wake up before the sun has even considered rising, your toddler has demanded two sippy cups of milk, four pouches of mini muffins, and a foot rub all before their father rolls out of bed. Those are the days that you need to spend some time with your friends and remember that these really are the good days. These are the days that you go hang out and drink coffee while the kids run laps in the basement. Maybe you load up and make a trip to the beach, playground, or an amusement park. These are the days that you make amazing memories with the people you really care about. It helps to balance out the bad days so they really don’t seem that terrible.
I think most people have seen the film Groundhog Day with Bill Murray. If you haven’t, a large part of the film he is waking up every day and doing the exact same thing every day. He’s stuck. Autism can be similar in that ritual and routine are vital to making the day go smoothly. Stepping outside of the routine requires a good deal of mental preparation for both Seamus and I. So, lets talk about a day in Seamus’ world.
It’s early in the morning. Most of the time the sun hasn’t even had a chance to rise before his little feet hit the carpet. Seamus is a little ninja and will go downstairs unattended. At least he used to. We started balancing toys on his lever style door handle so when he opens his bedroom door toys clatter onto the floor and wake us up. He sneaks into our bedroom hippos tucked under his arm and he unplugs his charged kindle tablet. We can’t figure out why but he calls it home. He then collects either Jeremy or I and we head downstairs. He lands on the couch and wants the kindle turned on. He likes to watch educational videos with colors and shapes. Sometimes he watched videos about Lightning McQueen from the Cars movie. This is followed by breakfast-milk and muffins, a walk-usually downtown or to a coffee shop, play time, lunch, play time, dinner, brushing teeth-always at 6:15pm, bath-always at 6:30pm, and his lengthy bedtime ritual. Seamus isn’t capable of being put in bed while he is still awake. He’s a sensory seeker. He will do everything in his power to stay on his two feet until he falls over. Unfortunately for us that means the more exhausted the faster he moves and the riskier the activities become. So typically before we reach this point we turn off the lights in the living room. Get him his hippos and blankey. Jeremy usually gets him on his lap and holds him in place. As soon as he starts falling asleep he fights to get away. He’s exhausted but he can’t miss anything that could happen around him. Some nights this process is pretty quick and only takes about twenty minutes. There are days that it takes well over an hour to get him to finally drift off. Carrying him up to bed makes you feel like you’re holding nitroglycerin during an earthquake. The slightest wrong move and you’re back downstairs starting the process all over again only now he’s angry and the fifteen minutes of rest just made it so he can be awake for another three hours.
Every day is almost entirely the same. Change is stressful and overwhelming to the point that if we go out and do things that are out of the ordinary he often doesn’t go to sleep until hours after his usual bedtime. Home is his safe zone. His bubble. I’m thankful that he is comfortable and happy here, but I would love for him to explore more of the world. Perhaps in time it will get easier.
I have no idea why he has such a tough guy look on his face.
Seamus had two cool new experiences this weekend. One was really showing some skill on his tricycle and managing to pedal by himself.
The other cool new experience was touching a frog! He’s tried this before but never really enjoyed it. My favorite part was when when the frog peed all over Jeremy’s hands. Seriously though, it was thrilling to see him touch something different and out of his comfort zone!