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.
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