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.
Where have the last three years gone? It seems like just yesterday I was sitting on the couch thinking you were never going to come out. Two weeks over due. That is something no mother should have to deal with.
It’s definitely been a wild ride. Everything about you seemed so typical. Everything came easily. Sitting, crawling, walking, all came right on schedule. You eventually said a few words like mama, dada, and shoes. For some reason you lost those and we didn’t know why. We loved you anyways. We knew what you needed and wanted. We knew your queues. You were happy. I never dreamt you would have to work SO hard to get the words to come back. All of the therapy, and working at home has definitely paid off. You’re doing so well. I know we have a lot more to do but, I’m so proud of what we’ve accomplished so far.
So, here we are. The start of a new year. A new plan to help you move forward. Seeing therapists four days a week to help your skills advance. Gym and social groups three days a week to help you interact with other kids. I know all of the work will pay off and you will flourish and be extraordinary. I have no doubt in my mind that you will amaze the world. I love you, sweet boy.
P.S. I hope you made a wish 😘
A friend of mine that is a LulaRoe consultant happened to suggest we try leggings out for Seamus as a possible solution to his No Pants Problem. She also has a son with special needs and understands what we’re going through in a very personal way. She offered to ship him a pair to try out free of charge. They showed up and without hesitation Seamus and I ripped open the package and I let him handle them. He played with them for a couple minutes. I rubbed them on his legs and belly. We talked about how soft they were. Here comes the moment of truth. I was going in for the kill. I said “let’s try these pants on!” Sure enough in went the first foot. There was no struggle. Second foot. Pulled them up his legs. He put them on. Not the slightest bit of frustration. He wore them for five consecutive days. I was taking them off and washing them after he fell asleep at night and putting them back on him for the next day.
So, my next predicament. He found something he would wear. The only problem is that these leggings retail for $23 a pair. Ouch. I took to Facebook to look for some discounted pairs. I wasn’t being pick about prints or colors. Just hoping to find a few pairs for as little cash as possible. I posted in a lularoe buy/sell/trade group about our situation and a link to my blog for some additional background. Within a few hours I had several consultants and other parents comment or message offering Seamus leggings for free or very discounted. So far he has accumulated a wonderful collection and I’m surprised he’s still getting mail. He’s gotten everything from leftover Halloween, New release Christmas prints, and he even got a pair that were a motorcycle print.
So, if you are sitting around and worrying about all of the bad in the world, you might miss the random acts of kindness that are happening every second of every day. People are good. Don’t doubt that for a moment.
p.s. if you happen to be a lularoe fan and see any of the monster prints in the first picture let me know! Those are his favorites and I wouldn’t mind getting a back up pair!
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.
I’m having one of those days where things aren’t easy. It’s not that anything out of the ordinary is happening either. Maybe it’s because I’m extra tired. Seamus woke up a little before 2 am and got into bed with us. This isn’t out of the ordinary by any means, but it was earlier than he usually comes in. He sat in bed with us and watched a movie and was still awake at 5 am. At this point I really was getting frustrated so I movedd into his bedroom and slept in his beanbag chair. I woke up at 7:26 because Jeremy came in to get clothes for Seamus. Guess what? We had an 8am appointment down at the hospital. I got dressed quickly and let the dogs outside. Out the door we went. He had a great session with Hannah today. We stopped and saw Jeremy at work afterward as a special treat. We stop often for visits at the office but they don’t mind. In fact it was reinforced today that it is encouraged. We got home and had breakfast and a half a pot of coffee for the mombie.
The mail came and the letter on top was from the neurologist. Dr Joe Barber. I knew what it was without opening it. It was the evaluation report from his appointment on June 20th. I’m not sure why, but opening the envelope and reading the report was harder than sitting in his office and hearing him say that our child is on the Autism Spectrum. He’s not a cookie cutter kid. He’s a little different and always will be. It reminded me that this isn’t something we will be dealing with short term. He will probably have therapies to go to for years if not indefinitely to help him function in a world that doesn’t see things the same way he does. He’s an amazing little person and I love him just the way he is. I just hope the rest of the world will grow to accept him as he is.
Maybe it’s the gloomy sky that has me feeling off, news from a friend that her life is changing forever, and a reminder that ours will always be different. Who knows. I guess it makes it a perfect day to snuggle up on the couch with the people you love and remind yourself about what is important. Which is of course cold milk, blankie, 2x hippos, and a kindle fire.
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.