My "Perfect" life

Why do we live in a world where what is "shown" on the outside matters the most, when did we become the as long as it "looks" pretty then everything is just peachy generation. Why do we need to show the world only what we will feel is "okay" and wont be judged by nasty ass judgey moms? Like seriously this is what causes mom isolation and depression the inability to vent or talk about what is really going on in life for fear of being judged by others. I am that mom who is careful about what I post on social media because of those out there who choose to judge others. When did we become so judgemental?

How on earth are we supposed to manage everything going on in our world and still look "perfect". My life is far from perfect and today is a "perfect" example of that.

Starting at 2am with being woken up by the thunder storm that shook the entire house great! Then Bossco my akita/shep all 175lbs of him freaking out and pacing and panting and just being in complete panic mode because it is storming out and he so scared of thunder is breaks my heart. Finally I talk him into calming down and doze off 3:30am Blaine wakes up this could have been caused by the storm, having to pee, a night terror, or just because my child doesn't sleep, like ever. I end up falling asleep next to him, causing Bossco to freak out once again because things have changed and its storming. I can't for the life of get him to come up and lay down with us so off he goes and hides in the bathroom. Blaine continues to wake up 2 more times. I finally sneak out not knowing what time it is, lay down in my bed and Blaines dad yells that its time to go...sigh its 6:15. Stop at tims woot!! they get my order right this morning with zero mix ups that's awesome!!! get part way to Blaines dads work and Blaine starts to puke, I SAVE THE BLANKEY (Go mom, go mom!). Get to dads work, get all the chucks off him and head back home. Get Blaine all cleaned up and his car seat cleaned up. Have a disagreement with Connely about parenting. Take Connely to school. Come back home its now 8:30am. I need a shower, Blaine needs a shower (oh this should be fun), I spend 15mins convincing him that we can't go to playgroup smelling like vomit. While doing this I am cleaning, taking out dinner, doing homeschool stuff and putting laundry in. Finally he agrees mainly because the dog tried to get into his new hiding spot and I wouldn't kick her out until he agreed to have a shower. It takes 5 mins to get him undressed and into the shower including promising that he can wash me with the loofa. By the time hes in the shower I now finished but have to be rewashed because that is the only way I can get him washed. Freak outs in the shower include: He is naked, he is wet, his hair is wet, his hair has soap in it, the water is too cold, the water is too hot. Finally he is washed and sitting playing with the toys in the bottom of the shower. I rinse off. I get out tell him to come get dried off with his pokemon towel NOOO its cold out there. Okay while I get dressed I try to convince him that he has to come out of the shower and get dressed so he isn't cold anymore. WOOT hes out!! dried and dressed. OMG I forgot to grab him socks!!! MELTDOWN because he has to have socks in order to wear his shoes and he has none on. SIGH I find him socks (the blue and red ones because I don't want another melt down) I get his socks on him. We get ready to go out the door for play group. Nope no shoes today, okay then no shoes thats fine whatever. Playgroup! Well surprisingly he did amazing at play group today, even played in the water and sand tables. Its time for us to go and he is okay with that. He has to then open or try to open EVERY locker on the way out of playgroup, this takes 10 mins. We pick Connely up from school and take him to work. On the way home Blaine starts freaking in his car seat that this IS NOT the way home. about 10 mins later freaking out the whole time, me trying to explain that its okay I promise we are going home, finally there is a corner he recognizes!!! Melt down over all is right with the world! We get home I make lunch, left over pasta (which he loved and ate last night), blueberries, melon and crackers. He takes one look at it and freaks out complete end of world melt down that he can't eat that because too much food makes him sick....SIGH....he only wants his milk okay fine whatever.  I give him milk and dear god yes my phone because I needed to sew!!! I get the first sew done on the baby blanket and start pinning the silk. MELT DOWN!!! about grass seed ( from last night left in the seeder) getting wet from the storm and it is not okay!!! Get him semi calm with the promise we are going outside RIGHT NOW to make sure the grass seed is just fine. Get his shoes on just right so the tag isn't funny and nothing is rubbing his socks and dad calls they are being sent home early. It is 1pm off to pick up dad promising we will check the grass seed as soon as we get back and dad will even play with you outside. Half way to pick up he realizes we forgot blankey MELT DOWN. okay distract with learning car games! nope nothing is good enough. Pick up dad come home and dad takes him outside. I have a migraine and am very very sore from my own lovely issues. I lay down. Blaine and Lexi coming running in 45 mins into my nap soaking wet. He needs a change of clothes okay well dad can help you. MELT DOWN and 15 mins of trying to get him changed because he doesn't want to be wet but he doesn't want to get undressed either and the dog MIGHT lick him. Finally get him changed and dinner into him, well okay like 3 blueberries but whatever. Off to the park because it is too hot to walk the dogs today and then photo shoot on Grandpas old Harley for Grandpas birthday. Dad takes him to the park because I am too sore to do anymore today. I decide a blog post is what I need to do. Mid blog post Connely needs picked up from work because his day is finished. He has to fend for himself. It is 6:00pm, I have gotten like nothing done today and it is almost time for Blaines bed time. Milk, a chapter from one a book we are reading, a chapter from the learning book (right now it is The Yukon), and an easy reader sometimes he helps me read it sometimes he is too tired (this week is bears on wheels), I sing three songs while rubbing his head and eyes and then I rest my arm on him for a 100 count, roll over but facing him for a 50 count and then some nights I get lucky and hes out other nights its out of bed and try again in 15 mins. Tonight I got lucky and he was out!!! I let the dogs out and suddenly is the dark Lexi is in the other yard, she has gotten out chasing a chipmunk. I panic, Bossco is in panic mode and Lexi is pacing the fence panicking that she got out and can't figure out how to get back. Richard climbs the 6ft fence and passes Lexi to Connely over the fence. We find the tiny hole she squeezed through and fix it! Now I get to pin the silk around a blanket and cut tulle for client orders. Blaine wakes up once to pee, by the end of this is it 11:00pm and I make and drink my "Big Chill" tea from Davids tea. Blaine sleeps until 1:45am wakes up for pee and milk. I get him back to sleep and let the dogs out. I go back to bed. Blaine wakes up again at 3:30am from a night terror I end up falling asleep in there. Richard wakes me at 6am and the day starts all over again!

One day things will change and slow down. One day he wont need me as much. One day he will be able to cope with life better. One day I will miss all of this. So today no matter how unperfect my life is I live in every moment!

a day in SPD/OCD/Anxiety and more.

Did you know that I have a love hate relationship with acronyms. They are great on saving time and not writing out the full word, they suck when they come after "well you child has.....".

Blaine just turned 4, he was never a "normal" or as the professional put it he is "atypical" child. Beyond intelligent, affectionate, kind, gentle, so many amazing traits.

I have no idea how I made it through the first year.

Blaine never slept for more than 20 minutes at a time day or night for the entire first year. When he wasn't sleeping he was either super happy, playing alert, learning or he was screaming for 4 hours STRAIGHT while I sang, read, walked, bounced, swung and through out it all remained calm and relaxed so he wouldn't fed off any vibes I was giving off. From birth he couldn't swaddled or he would lose it, he hated certain sleepers/outfits, socks, hats, mitts or the like where a HUGE no go. He hated his dad, would lose it if he even held him for a minute. Dressing, diaper changes and anything involving me laying him down resulted in a full out lose his shit moments, no matter what toy or game we played. Once he could stand it was all done while standing, yes even poopy diaper changes. Car rides from the time he was a month old meant SCREAM FEST and throwing up even it was to the gas station. He met milestones long before he was supposed to. He held his own head up at the hospital, rolled over on purpose within the first month, loved food from about 2 months on (no joke you couldn't keep it away from him at 2 months he would steal it off your plate and eat it). He spoke early, walked never crawled. Climbed EVERYTHING before he could walk. He was fully walking on his own by about 7 months. He was saying words like "COOKIE" and reaching for the cookie at about 10 months and it was clean.

By 18 months he had full sentences and at least 100 words. He still hated his dad, and couldn't be left with him. By 18 months he still wasn't sleeping more than 1-2 hours through the night and nap, whats that. Shoes were a no go, socks had to be on certain way and dressing and undressing were a nightmare. Everyone was impressed with how advanced he was. No dirty hands, his toys had to be a certain way, his clothes had to be certain ones, suddenly food was a no go and death to us all and a full change of clothes if he even got a little bit wet. He can't stop moving, he is go from the moment he wakes up until he crashes. His father is telling me it is just in my head.

At 2 we were told he had angioedma, this pretty much means he is allergic to EVERYTHING but at the same time nothing. Today the grass could make him blow up like a balloon, tomorrow the grass will be fine but a scratch from his own finger nail will cause it. He gets a full body rash EVERY TIME he gets sick, even the slightest cold.

 At 3 he was fully night and day time potty trained. Suddenly he was sleeping for 4-5 hours at a time at night as long as you didn't let him even cat nap during the day because if so he was up until at least midnight. At this point he had tubes put in and his adenoids out because he had 36 ear infections from 6 months until 2.5 years. The ENT said after his surgery he had no idea how he could speak so well because he wasn't sure how he heard anything. Scar tissue from the infections has caused hearing damage. Tubes in and the clarity of the speech improved, eating semi improved. 3 months later he gets a double ear infection and we are back to square one but at the time I couldn't figure out why. He was super easy to potty train both pee and poop and he always woke up on his own at night to go pee. He has to clean his hands after playing with anything dirty, loves other kids as long as they don't touch him or his toys or get too much into his space. He is still not a fan of his dad, he is okay for short periods of time or when doing something really fun. Things have to be a ridged certain way and schedules can't change, one seemingly small thing to me ruins the ENTIRE day for him. He can't stop moving even while watching a show or snuggled up for bed. I question his pediatrician, he spends five mins with him in his office and say hes advanced and just very active. SIGH!!! Thanks.

I contact Pathways it takes months but he gets an assessment!! WOOT finally maybe some answers. She meets with me I tell her everything. She says I want to meet with him and recommended St.clair child and youth as well. I make it clear I don't want him medicated I just want more tools for helping him cope with what seems like EVERYTHING is too much for him. I contact st. clair child and youth. Pathways sees Blaine, SPD, OCD, Anxiety and low on the spectrum. I see St. clair child and youth they fully agree. I do their workshops to learn more ways to help him. I see pathways monthly. I am learning, I am watching, I am seeing things I never really paid much attention to before but are seeking behaviors. I learn about cups and how he has shot glasses for most and a GIANT bucket for one of them. He wakes up almost at the top of what he can handle for the day. We work all day on filling his giant bucket so the shot glasses don't over flow and cause melt downs. I don't even pay attention to the stares in public anymore. We have little to no family support from either side so we are doing this on our own and that is okay because then Blaine consistently gets what he needs. He is getting better with his dad. His dad admitted he just didn't want to see what really was going on, but knew something wasn't right. Both Pathways and St.clair agree that homeschool is the best for him.

He has been assessed by the speech pathologist. He will see her every 6 months and she wants his hearing tested once the new set of tubes are put in and his tonsils are taken out. He has very advanced vocabulary and sentence structure, about a 6-7 year old. He has trouble organizing his thought process and mixes up words because of the SPD. 

Learning "why" he does something that makes little or no sense to me and having almost daily AH HA! moments on things that work and don't work. I have read the book the out of sync child and it has given me even more knowledge about him and the reasons "Why". Things will likely never be "easy' with Blaine but I never gave up and got the ball rolling early so he will be able grow up with ways to cope when things inside him are not right. When the whole world is on fire to him, he will know what to do, over time of course. He will also know how to fill his bucket on his own with little to no reminders.

When you see me "giving in" its not really what you are seeing. You are seeing that my son just did a store where the lights are too bright, there are too many people, its too noisy, his clothes hurt, and he is not okay. You are seeing that he is getting a small toy to focus on and you are seeing him freaking out because suddenly it has to be scanned and he has just lost what he was focused on and now the entire world is on fire again.
You are not seeing a child who will not stand still, wont stop touching everything because he "can't listen" you are seeing a child who is overwhelmed by EVERYTHING around him and is looking for some distraction from it all. 

Some days when we have done a good job and his bucket is full you see a child who has great manners, is gentle, kind and loving.

Each day is new and each day we learn new things. As I write this I am preparing to do the weekly shopping which is a nightmare that I must remain calm and relaxed no matter what so he doesn't feed off my feelings.

If I hadn't had the childhood I did, the close bond with my son, the brain injury and the ability to learn, and if it hadn't been for taking care of my nephew I wouldn't have figured things out as quickly as I did. 

SPD and all the comes with isn't easy but helping to give my child the coping strategies to be a "normal" adult is worth it.

We are all great moms just trying to get through this meltdown.