A trip to the Fair

J and I spread autism awareness at the fair yesterday for a few hours. He really enjoyed it! Enjoyed the high ceiling barns, the ceiling lights in the barns, the huge industrials fans and the intercoms when the voices from above came through them (lol). Wish I would have gotten a video of his reaction to this, it was hilarious! He could have cared less about the bunnies, pigs, cows, sheep and chickens that were all around us. Best of all, I didn’t care that he didn’t care because we were having a good time. He sat backwards for the longest time on a bench so he could face the pig barn. He flapped, he giggled, he pointed at all the things he was interested in and enjoying. I was able to pull him away from it when we met up with Grandma and had a traditional fair lunch of cheeseburgers, tenderloins, fried pickles and lemonade with a side of a Minions movie just to get J to sit and eat. This was short lived as J wanted back to the pig barn as quickly as was possible. So off we went. We made our way into the middle of the pig barn which he was happy to be up close and personal with all the things he was interested in. Grandma got J to finally pet a pig and we could have pet a bunny but J was too far gone about getting back to his designated bench to realize a bunny was near.

We enjoyed 3 hours out at the fair and said our good-bye’s to Grandma but when it was time to actually leave that is when autism leaked all over smack dab in the middle of the fair. This was just unacceptable to J, who of course wanted to stay in the pig barn. Nothing I could do was working to get him to leave with me. So thankful for an old friend that was near and knew I needed help from my mom. I’m thankful that my mom was there and could come to help. I had to carry my whining, fighting, kicking, biting, 62 lb. child halfway to mom’s car which was closer than ours so she could then take us to our car. Once J was in the car he was night and day, completely calm again. Ready for the new adventure.

I know I was getting looks, stares and probably a few “kind words” from all the spectators watching this show. I was mortified for a few seconds after we got to the car, close to a cry-fest myself.  I was able to pull myself together because it is what it is and it was over. This is why though J and I don’t/can’t go out to public places just us two without additional support in place. If this behavior happens I can’t handle it completely by myself. It’s sad. I want him to experience so much and yet staying at home is our only option most of the time when it’s just me and J. Overall, I’m glad our trip to the fair was fun and only marred by a few minutes of extreme unpleasantness. We’ll try again next year (with dad in tow though).

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From Scratches to Snuggles

As I sit writing this, no coffee yet to be had, it’s 6:53am. All is quiet. Lance will be up in a “few minutes” and J is still sleeping, I think. I’ve heard two thuds against his wall but no other sounds as I quietly sneak down the always creaking stairs. Please don’t be waking up just yet, I silently pray to myself. Though I went to sleep last night thinking I was okay with tears still in my eyes, these wee morning minutes to myself are a blessing as I continue to process, reflect and get ready for a new, better day.

Yesterday was one of though days, one of the hardest I’ve experienced with J in a long time. Maybe it was because I decided to run errands on the hottest day of the year, so in and out of stores we went or maybe it was because he wanted more screen time that he wasn’t getting or maybe it was due the fact that he truly needed a nap but wasn’t showing me any signs of this. And though I’m not completely innocent, I am blaming the majority of the issues we had yesterday and really for the last week on the changes to his seizure meds… and a bit to autism. Autism is always lurking there, around the corner, ever present, ever constant. Some of the issues we have can be chalked up to him being a typical 6 year old having bad behavior, but J’s bad behaviors come with a side of aggression that can be fierce and unrelenting. We are constantly working, showing and explaining to him what is appropriate in the most simplest of phrases we can but it feels like only tiny steps are being made in the right direction at times. Although I have scars and bruises from the scratching, hitting and kicking I endure, I would rather it be me than anyone else. I am his punching bag and his rock. And even though this is not right, it is what I am right now. I will always do my best to use his aggression as a teaching moment (“nice hands”, “no hitting”, “nice touches”). Even though his ordeals can last from seconds to minutes, a switch can literally be turned and from this he’ll want to sit on my lap to snuggle and have a kiss. My hope is that one day, one day, this will all click and remain as a cognitive understanding for him. So as this week has been one to put in the books for sure, the weeks before were great with minimal behavior issues and we were making progress, we still are. As the hubby said last night, we will be okay, it will be okay and J will be okay. As I tell myself this morning, I’ve got this!

So now it’s time to get my coffee and read my book as I wait for J to wake, my little prayer was answered, so I can give him his requested morning snuggle and provide his ever constant request, screen time. Now where is Lance? Oh that’s right, he’s still in bed. “Few minutes” my eye.

**Update on J’s seizures:

We were able to get J into neurology early, thankfully after being placed on a waiting list. Our doctor wanted to start weaning him off the meds he was currently taking (which can cause irritability!) to a more appropriate med for his type of seizures. This was going fine for about 2 weeks and we were seeing improvement, no more seizures. But in the last week, when we really started increasing his new meds, J started showing his displeasure in taking them and outright refusing them, along with at times refusing to eat or even drink. And no wonder as the meds taste like crap! They were also causing nausea, which we experienced all over the kitchen table, all over the floor, all down himself and in his bed. One of the worst feelings as a parent is to know your child got sick in the middle of the night but you didn’t hear or wake up for it and he was tired enough to just go back to sleep and not attempt to call out. Poor guy. So we went cold turkey Wednesday, not that I really wanted to but what else are my options as I couldn’t get the meds down him even if I forced it. I called neurology and switched his meds Thursday from a liquid form to a pill sprinkle which we mix in with chocolate pudding. It is still an ordeal to get him to take because it is something different and unexpected, but with a little finagling we can get the job done. It doesn’t taste nearly as awful, just different and now J is eating and drinking as before. Now we just wait for the new form of meds to regulate through his system.

Autism & Affection

In the past I always wondered if J misses me when I’m not around due to the fact that for the longest time he couldn’t express it. No I love you’s, no mom’s or dad’s, no verbal signs of recognition of either Lance or myself. How my heart would ache when listening to other little ones talk to their mommies, did those mom’s understand how incredibly lucky they were to hear ‘mommy, mommy, mommy’? I did. Instead, I’ve always cherished the random acts of physical attention from J, a random hug, taking my hand and a snuggle when he’s tired.

During the school year, his support staff started teaching J how to sign mom and dad which we were more than happy to reinforce at home. It not only helped him ask for us but also prompted verbal communication, basic syllables of ‘mmm’ and ‘ga’ (for dad). So with our new schedule this summer, J has freely began to ask for both of us when we aren’t home with him. Lance has noticed an uptick of ‘ma’ coming from J with a questioning look on the days I’m at work and I get a lot more ‘ga’ in the afternoon when J is ready for Lance to come home to play and rough house.

My heart literally melts that he can now ask for either of us at any given time and in turn we can explain to him where the other is but that he will get to see one of us soon. He is able to understand and for the most part accept these answers which has allowed J to show us both additional affection because, I feel, he is happy to be with Lance or myself when the other isn’t home. However, our boy is happiest when we are all home together and I agree with him completely!

This home is built on love & (usually autism related) shenanigans!