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 husband has been out of town since Sunday and I have been feeling super anxious since he left. I couldn’t figure out why but every day my anxiety was getting worse. Thankfully, I take medication for anxiety and depression so it really helps, but I couldn’t help this feeling that something was wrong.
Yesterday I got a message from my son’s SPED teacher showing me some of his writing work samples from this week. His writing ha gotten very erratic and almost illegible. She also said that he had started making noises more frequently in class. These are red flags to a PANDAS/PANS parent. It usually means he is going through or at the beginning of a flare up.
He was louder than usual that morning and just all over the place until I turned on Wallykazam and he settled down. I’ve hads a feeling this was coming, but I had to just see how he was doing for myself, so I went to his school and had lunch with him. He was fidgety and, sure enough, his pupils were completely dilated, despite having a hat on (he is allowed to keep his hats on in school because the awful lighting hurts his eyes a lot of times) . These are an indication that he is going through a flare up and that there may be some inflammation in part of his brain. I always carry children’s ibuprofen with me, so I took him to the nurse’s office after lunch and gave him some. It’s the first course of treatment anytime he starts flaring.
I have an appointment tomorrow with his doctor and for now I keep giving him the ibuprofen every eight hours to keep any inflammation down. I guess my intuition was trying to tell me something and I just couldn’t figure it out until yesterday.
PANDAS is an acronym for PediatricAutoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. It is an autoimmune condition initially triggered by strep infections, which disrupts a child’s normal neurologic activity. PANDAS occurs when the immune system produces antibodies, intended to fight an infection, and instead mistakenly attacks healthy tissue in the child’s brain, resulting in inflammation of the brain (basal ganglia section) and inducing a sudden onset of movement disorders, neuropsychiatric symptoms and abnormal neurologic behaviors.
The signs of acute-onset OCD are different:
It’s as if child is suddenly “possessed” by OCD symptoms
My son has several on this list, but thankfully suicidal thoughts is not one odd them! He had been rather emotional dating he doesn’t deserve certain things or that things are all his fault once he calms down emotionally.
Bottom line…Mamas know when something is going on with their children. My gut has never been wrong when it comes to my Chipmunk and I trust it. I know him better than anyone and we are very in tune with one another, so when my anxiety level went up my gut was trying to tell me something. Now I just have to get him through it. We’ve been here before and i’m confident in myself and his doctor!
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!
Yesterday I picked up my son from school and he was acting kind of off. He was argumentative and rude with me. I started thinking maybe he was in the beginning of a PANDAS flare up, but I felt like there was something he wasn’t telling me. He was so irritable, but we were meeting Daddy for dinner and then he was going out to play Pokemon GO, so I figure that would lift his spirits. We had dinner and he seemed a little better. When they were getting in Daddy’s truck to go on their way, he suddenly told us that there’s a boy in his P.E. class that keeps picking on him. He says he doesn’t know the boy’s name and that he’s in another 1st grade class, but that he gets in his face everyday and says really mean things to him. Now things make sense to me, he doesn’t understand why someone he doesn’t even know would say these things to him or be mean to him. My son never tells on other kids because he doesn’t want to get them in trouble or have them get mad at him. As a parent this is where I step in to help! I told him I’ll talk to his teacher and take care of it.
I wrote his teacher immediately last night and explained the situation to her. She knows him very well and he trusts her, as do I! She said she would have him discretely point the boy out to her in school the next day and then she would talk to the other P.E. teachers to tell what’s been going on.
I went and had lunch with My Chipmunk today and had a nice time. He said his teacher took him aside and explained her plan and that she can always come to him with a problem for help. That seemed to make him feel much more comfortable. My dad (PopPop) picked him up from school for the weekly sleepover (happens every Friday) and my son video chatted with me to tell me how the rest of the day went. The teacher came in the P.E. class, as planned, and he showed her who the boy was. Then his teacher went over and talked to the P.E. teacher. My son was in such a great mood while talked and he thanked me for taking care of his problem. He’s so sweet!
The disadvantage to a lot of kids with Autism is that they don’t always understand when they are being made fun of or what to do when they are being picked on. I knew this day would come. I was just waiting for and praying that it actually wouldn’t. I think that it was handled very well and I’m very thankful for his teacher’s intervention on his behalf. He’s not a confrontational guy (except for maybe when he isn’t getting his way at home…lol), so this was a hard thing for him to have to deal with on his own. At least now he knows what he can do of it happens in the future. I told him “you will come across mean people in this world as you get older, but always remember that there are more good people than bad in the world and those are the ones we look for.”
Last night our Chipmunk definitely pushed our buttons. He tested our patience and we didn’t handle it in the best way. There is no such thing as a perfect parent. We all make mistakes and we learn from them so that we can hopefully be better next time.
I have many “not so proud of myself moments” over these 7 years since becoming a mother. When our son was diagnosed it was like the weight of the world was placed on my shoulders. Not only did I still have to do all the normal parenting duties but now I had so much to learn to be a good productive parent. I needed to know the difference between throwing a tantrum and a meltdown. I had to know his triggers for those meltdowns. I needed to (and still fight every day) to find patience for the rough days. I had therapy appointments, specialist appointments and his usual doctor appointments. Now he has newly been diagnosed with PANDAS (which is a whole other world of knowledge I have to learn) and ADHD. I now have to limit certain foods, he requires specific vitamins (even those have to not contain methyl because those cause overstimulation in our son), no flouride (because it acts as a neurotoxin), and no food dyes (again causes overstimulation, some more than others. Red and Blue dyes are the worst)…I do t believe in giving artificial dyes to anyone anyway and in Europe they are banned. Way to go USA…they serve no healthy benefits and cause so many problems. I’m getting off topic and will make a post of food dyes and how they effect our children another day! My point to this post is this…no matter what life throws at us my husband and I will always be there advocating, educating ourselves, and mostly loving our Chipmunk. This is not an easy journey, but I wouldn’t trade ours for anything!
I saw this image online just now and wanted to share it because it is exactly how I feel! Through the good days and the rough days, I am SO PROUD of our Chipmunk! As adults we sometimes forget how big this world is to our little ones. Every day we want them to learn new things, behave, sit still in class, be kind to others, and it’s a lot for their little minds to take in. Children are the bravest people we will ever know because everyday they have to face this scary world that is all so new to them. They don’t have the years of experience we, as adults, do.
On the way home from school he asked me if I’m his friend and I said “No, I am something so much more than that… I am your Mother. I wanted to be your Mother my whole life and you are the best thing that has ever happened to me. I am someone you can always confide in, someone that will always be there for you, someone you can snuggle with (no matter how big you get)! I am also the person that has to do the hard things like grounding you when you don’t do what’s expected, it is my job to take you to the doctor, hold you when you get a shot or when you’re sick, and it is my job to not always give you what ut ou want. Maybe someday when you are grown up, we will be friends, but I will always be your Proud Mother!” He said “Oh that’s a big job, do you like your job? ” To which I replied “I love this job, the boss can be kind of a pain, but he sure is adorable!” He looked at me and giggled and said “thanks, you’re pretty cute yourself!”
At least he took his medicine for his Dad and then climbed in bed with me to snuggle until it was time to get up. The alarm went off at 7am and he refused to get up. I spent the next 20 mins arguing about getting out of bed to get dressed. I finally got him into his room and picked our his clothes he wanted to wear today. I told him I expect him to be dressed when I get back from changing. I return and he is standing his socks and underwear. Ugh….I just left and went downstairs to give myself a timeout. He finds all this so amusing and I’m trying so hard not to blow up at him. I can’t figure out how to get through to him. It’s like there’s some secret code I need to crack in order to have a breakthrough with him. I feel completely unqualified for this job, yet I have not choice but to push through every single day! I’ve made charts (per his personal request) and it doesn’t work.
I’m on 3 different medications for my depression and anxiety that keep me going. I literally have to medicate myself to function without losing my mind.
Now we’re fighting over his vitamins again. I wish I could just say screw it, but he needs them to have a productive day and we’re running late. Why is there not a course for parents to take when they have a child on the spectrum? Someone please tell me how to make this easier!!!
I know a lot of parents (on spectrum or not) know what it’s like to fight through bath time, but my son screams and doesn’t want the water on him. It took 20 minutes just to get him undressed, then it felt like I was wrestling with a wet snake to get his washed up. Normally, Daddy handles showers, but I did it tonight because I know he tries to get away with things with him that he knows I don’t put up with. So I took Daddy out of the equation tonight and told him next time he will get ready when he’s asked to and he can do his shower with Daddy.
It’s so draining having my child screaming in my face and trying to hold my sh*t together. I know it’s because he’s tired and he should’ve been in the shower a lot earlier. I know he doesn’t mean the things he says to get under my skin. I know I’m the adult and I should ignore those mean words, but I’m also human and can only take so much. I’ve broken down into tears, to the point of an emotional breakdown, several times over the last few years because I just didn’t know what else to do or how else to handle him in those meltdown moments and had him laugh at me for crying. Empathy is not usually a strong skill with Autistic children, but it will push you over edge to have someone laughing at you in your most raw moments. The Autism journey is a very hard one to walk through. I am lucky to have the support system we have, but sometimes I still feel so alone in this.