I haven’t blogged in a few days, mainly because my phone was acting up. The last week with my Chipmunk has been hectic. He has apparently lost his damn mind and thinks he became a grown man recently, that can do and say whatever he wants. 2 days ago I had enough. If I told him he was grounded he would say “No I’m Not, I’ll do want I want.” Ummm…NO YOU WON’T! So I went on a rampage, grabbed 3 storage bins, and took every toy he owns! I will be damned if my child will grow up to be an entitled little turd that thinks the world revolves around him!!! He now has to use the morning chart to earn a smiley face each day, at the end of the week he earns 1 toy (of his choice) if he earned all 5 smiley faces. If he doesn’t, then he gets nothing! May seem harsh but I have to send the message that I am in charge.
He knows he has PANDAS/ PANS and will sometimes try to blame his behavior on that but, sorry kiddo, I do know the difference (most of the time, anyway)! It can be tricky figuring out when he needs a break or discipline. Being a parent to a child with so many diagnoses is like walking a tight rope every day, but they learn quick to use it to their benefit. Lol
I tell him every day that I Love Him To Pieces and the other day I was feeling creative. I thought I’d make him something to be a constant reminder to him, so that no matter what happens I always love him. I painted this sign and hung it in his room.
With my husband out of town for work all week, it’s been busier than normal for me. I have a child going through his usual defiance with me and add to that his flare up, a house that looks like a bomb went off, dishes in the sink, I need to vacuum, dust, etc. I had planned on cleaning the house last night while son is at his weekly sleepover with my parents. Instead I went to Target, and strolled through the store while enjoying my Venti Java Chip with extra frap roast!
Then there are the actual animals that also live here (because I love animals and also love torturing myself with added responsibilities). There’s my gentle giant, Chase, our Golden Retriever (who decided to leave me a giant present on my new throw rug this morning). There’s my fluffy girl, Paisley, a beautiful rescue cat that we got as the tiniest kitten 4 years ago. Finally there’s Asher aka Little One, who is full of energy because he’s still a kitten but such love bug. While I love them all dearly, I am currently locked in my room with a sunflower seed cinnamon roll and iced mocha coffee, blogging away, enjoying the sound of nothing but my fan blowing. The dog seriously needs a bath, but I just don’t have the motivation to do it.
Thursday was My Chipmunk’s big day. He had his award ceremony at school. Of course Daddy couldn’t make it, but I had my Dad video call him so he didn’t miss it. Normally large groups and clapping would upset our son, but I was so proud of how he walked right up to the front of the assembly and accepted his award all by himself. He’s growing up and somethings he’s really starting to cope with on his own. Then as the ceremony drug on for he kids after him he started to get upset that he was missing his morning routine in his class and I wasn’t sure he’d make to the end without a meltdown, but he did and then bolted straight out the door once it was over. Still a success, but the idea that he was off his routine weighed heavily on his mind and that was all he could think about!
Friday morning was yet another struggle to get up, eat breakfast, take his vitamins and medication, get dressed and out the door for school. He seems to enjoy watching my reactions when he doesn’t do what is expected of him, and I admit I have never been the most patient person. I get upset around the 20th time of telling him to eat or get dressed. He knows what he’s supposed to do, we even have a cool chart that we agreed on and then I put it up in the main hallway where he can see it, but he just doesn’t stay on task. By the time I finally do drop him off at school, I am spent!
I had all these ideas of things to get done while he was at his sleepover and so far I scrubbed 2 toilets and the bathtub. It’s something, I guess! I need to get my butt in gear because I pick him up in two hours, but the energy just isn’t there. I sound like a bum, but honestly, I would love to NOTHING for a whole day. Back to reality, I need to get ready and get something accomplished before I pick him up and head to lunch with his cousins! I definitely see more coffee in my future! Lol
After my post this morning, it was really early, but I just couldn’t go back to sleep. My brain just kept going over the last few days with my son. Looking for any other reason, but I knew he needed to see the doctor. I wanted him to tell me I was wrong, that I was over analyzing things, but I still knew what he would say.
The doctor confirmed that my son is having a PANS flare up (because Strep was not a factor) and that basically my son has a very sensitive system. So someone could have a cold or the flu and his antibodies could be triggered. He put him on a new broader spectrum antibiotic and we have to continue his ibuprofen every 8 hours for the next 10 days to keep any inflammation down while the new antibiotic does its job.
PANS is an autoimmune disorder where basically a virus enters the body and it causes your antibodies to attack anything that looks like that virus or bacteria, usually the brain is affected and becomes inflamed causing a sudden onset of behaviors, tics, OCD, aggression, etc.
I’m lucky because I stumbled upon the information on a Facebook post. The symptoms all sounded just like what happened after my child had two bouts with Strep last year. I found the best Autism doctor (this man has an almost year long waitlist to see him) that all the parents from different Autism Groups raved about and I private messaged him on messenger about my son and his symptoms. That might have been slightly unprofessional, but he was kind and messaged back that he wanted to meet with us. He happened to have cancellation a week later and fit us in. I love this doctor and so does my son. He also happens to love his favorite nurse, Bonnie. Dr. Madren has been treating him for PANDAS but now we have to treat for both disorders. I will move Heaven and Earth to get whatever the best treatment is for my son and I feel that we have a great team backing me up!
My Baby has come so far! 2 months ago he couldn’t get through the week without getting in some sort of trouble. We were lucky to even get 1 Green Day a week. He struggled constantly and I even called an IEP meeting in the first 3 weeks of school to get everyone on the same page with me as far what my son’s needs were and how I expected them to be met. They even joke now about my big IEP binder. I always sit at the head of the table (sets the tone that I’m heading the meeting) and every person gets a handout of the outline of topics I will need addressed, plus a list of accommodations I proposed for my son. I worked closely with my son’s doctor and agreed it was time to try him on Concerta. The low dose didn’t do a lot but I could see a difference, so we bumped it up to the next dose and Mason is thriving. Every day is a green day and he’s so proud of himself when he tells me “I got another green day, Mommy.” The feeling of seeing your child proud of his own accomplishments is hard to put into words. It’s the only thing I want for him is to be happy and proud of himself!
I received a message from his teacher, last Friday, that he was chosen as class citizen of the month! Only a parent that has been deep in the trenches of the Autism battle to better their children’s every day could understand just how HUGE a victory this is for my Chipmunk. He was so excited when I told him and he said he told all of his teachers that he works with at school!
It will be interesting to see how he handles the award ceremony on Thursday. Big crowds and lots of noise are a few of triggers to run away, he doesn’t even like his birthday parties (that’s a whole other story for a different time). I’m hoping he’s a bit older now and on his medication, so it will go smoothly! If not, I’ll be there for him like always. It’s just baffling how far he’s come in such a short time! We are just so proud of him!