Acceptance

As long as I can remember, I have always been an overachieving, people pleaser. I was always the kid who followed all the rules, the teacher's pet, and got straight A's. Adults and kids both liked me. I always felt accepted every where I went. I guess that's why I have such a problem with people and their lack of acceptance when it comes to Mini Me. Allow me explain.

Last year, it became crystal clear that his preschool teacher, school director, music teacher, and PT teacher did not accept Mini Me due to his behavior ticks. He was a square peg trying to fit into a round hole. Parent- teacher conference resulted time after time after time. "Mini runs from the teacher, make disruptive noises in class, can't sit at his desk, etc" they said.  At the gym, Mini was threatened to have his membership permanently revoked. "He doesn't listen, is disruptive, and bugs the other kids" they said. Now, at the new school, we are once again threatened with removal. The place that I had only a few months ago seen as a safe haven, has now become a battlefield.

Now, to be perfectly honest, we have had some pretty serious life changes lately. JT went back out on the road for an undetermined amount of time resulting in my single parent status, and I went back to work 6 weeks ago because I was convinced that Mini was in a good place. After all, he was put in the SDC class and he was thriving. He was with people who knew how to handle him and his condition. I felt like we had finally found home. So, I went back to work and put him in the after school day care at his current school. Well apparently, the SDC class and the after school class are like night and day. He is sent home with the "Mini hit/punched/pulled hair/sat on/ random kid" notices from after school care on a daily basis. I feel betrayed by people who are supposed to know about my son and how to work with his condition. I waver between crying and wanting to punch someone in the face (neither of which are socially acceptable by the way). I want to think that he will grow out of this and one day he will be accepted, but I worry that may never be how our tale ends. I suppose only time will tell...

New Year, New Boy

School started this week. To me, Tuesday felt more like Christmas than the first day of school. I was so excited for the boys that I hardly slept. Boy Wonder started second grade and Mini Me started Pre-K in his SDC (special day class). Now if you remember last school year at all, school was a challenge for Mini and I to say the least. Mini was not talking a whole lot, used words instead of sounds, and wasn't very social to say the least, in fact biting was a far too common occurrence. Nearly every morning's drop off resulted in his crawling under the table and screaming, then school calling me to pick him up after 20 minutes of a meltdown. I can't blame them. Who wants to listen to a screaming child in full epic meltdown mode? I don't and he's my own flesh and blood! Well this year he's a completely different kid. He's in a class with other children who are on the spectrum, most of them mild like Mini. His teachers and aides are behavioral therapists and they know how to work with special needs kids. Yesterday, Mini had a meltdown in class because he didn't get the yellow chair to sit in. He crawled under the table and cried. They never called me. Instead, at pick up, his teacher told me that he had a rough day, but he was working on giving his brain and body a rest to remind him that its good to be flexible. A lesson we all could learn for sure. For the first time, Mini is completing full days at school and coming home to tell me about all the friends that he has made and the fun things that they did in class. Mini's journey is teaching me to slow down and appreciate what others take for granted. It's not always an easy journey, but it's one I wouldn't change.

Pity Party, Party of One

The last few days have been roughly tough and emotional in our house. It started with Mini's verbal regression and then smacked me in the face this morning with a full on old school style meltdown when it was time to get on the bus. As with most of his meltdowns, the trigger isn't really known nor does he verbalize why he's upset. Instead he does what we call wet noodle. His body goes completely limp and he shuts down, right down to closing his eyes. Have you ever had to carry 52 pounds of completely limp human? I have. It was this morning (and many, many other times), pulling his slumped over carcass up the flight of bus stairs. The bus drove off and there I stood confused. The regression had slid back to the wet noodle. It felt like we were back at the beginning all over again. And then I got mad. Mad at the whole situation. This journey is hard enough for families with ample help, but walking through this journey by myself 75% of the time made me even more mad. And so I stewed for a bit, and then I cried. Cried because I wasn't more understanding. Cried because I was angry with Mini for reacting the only way that his brain knows how. Cried because I felt sorry for myself. There it was. I felt sorry for myself. In a world that's falling apart everywhere you look, I was having a pity party for myself. I felt stupid. The way I see it I have two choices. I can succumb to the "ME" moments or I can put on my big girl pants and persevere. I choose to persevere. Although, don't be surprised if you find me in a momentary lapse of judgement...

Regression

Set backs happen I suppose. Previously potty trained children start having accidents again after the birth of a sibling. A child who was coming out of his shell starts to act shy again around people. For us, regression started last week after 2 months of steadily making progress.

On a Thursday Mini Me jumps off the bus like he always does, only this time he's visibly upset. He's crying and refusing to talk. I give him some space and wait a little while. I ask again, what's wrong? Did something happen at school? On the bus? Nothing. No words, just a head shake and noises. Dreaded noises.

Noises is how Mini used to communicate. You knew he was upset when he burst into his high pitched squeal and ran. He had been doing so well lately with using words to describe when he was upset that I had all forgotten the death squeal. That is of course until last week when it reared it's ugly head. Now I know that I'm suppose to be all motherly and nuturing, but the death squeal kills me. I hear it and it makes me angry. It reminds me of how far we have come and now how far we have regressed. I know that the road is long and not without set backs, but the return of the death squeal? Ugh. Lord help me.

Brave New World

It seems like everyday brings something new to us these days. Mini Me started summer school this week. The bus came by to pick him up on Monday morning (first time on a bus) and I thought I was going to lose it. I put him on the bus and quickly went back into the house. I felt a whole range of emotions I didn't know lived in me. I was excited, sad that he was leaving me, worried that he was scared about this whole new experience that I wasn't there to help him transition through. Turns out he was fine, I was the one who was the wreck about everything. He loves school and his new teachers, which I am grateful for. Now I just need to learn to navigate through the field of people who don't quite understand what it's like to have a sensational child.

These last two weeks marked the end of the school year for us and the beginning of summer vacation. This of course means trying to arrange time for Boy Wonder (Mini's older brother) plenty of time to see two of his best friends. Of course we have been overwhelmingly blessed by the boys that he has chosen as his best friends. I know their families well and they are great families. One of the moms is like my rock. She is strong, in control, and can handle 4 boys under the age of 8 like no mans business. The other (a teacher) is much more mild mannered. She and I have had quite a few conversations about Mini's destructive nature (as well as his diagnosis) and she, being so sweet and mild, simply said to me "oh he's so quiet and sweet, he can't be destructive". That is of course until he was, all over her backyard. Mini likes garden stuff- wire butterflies, glass lights, trinkets of that sort. So it came as no surprise to me that in the ten minutes he was in their backyard with Boy Wonder and his friend that Mini managed to do some damage to some wire butterflies. Of course I apologized profusely and offered to pay for any damage (btw, both boys are costing us a fortune in damaged property already). But still I found that both Boy Wonder and Mini Me were not allowed back over for a while. That was it. Play date hiatus. I didn't tell Boy Wonder that the reason he couldn't go over to his best friends house was because of his brother. That would have just given him more of a reason to despise Mini. Instead, I chose to sweep it under the rug and not mention it to Boy Wonder. But it leaves me to wonder, in a world of people that you think are understanding and sympathetic, are they really? Or are they understanding only until it inconveniences them?

Somedays I feel like I have diarrhea of the mouth. I am constantly explaining to people why I have to follow Mini around to make sure that he's not breaking things, starting a fight, jumping on the neighbors dog and trying to bite them (seriously happened yesterday) or running and screaming down the street. Everyday brings something new. I only pray that that I am up to whatever tomorrow has in store for me.

Shaved Ice and Epic Meltdowns

It's a beautiful summer like day here in Southern California. With school getting out next week I am already in full on summer mode. So I decided that for a special treat I would take Mini Me and Boy Wonder out for shaved ice (i.e. summer in a paper up cup). Both boys were very excited until we walked in the door. It was crowded. The floor was sticky. There were too many choices (no lie, this was an actual complaint). There wasn't any place to sit. Blah,blah, blah... So we waited in line. The boys finally decided what they wanted and then we waited longer to get our shaved ice. Mini Me was having a particularly tough time. He was wearing flip flops for the first time and they would not stay on his feet. The floor was sticky so his flip flops were sticking to the floor. He was frustrated. Finally a table opened up and we sat down. Guess what? Yeah the table was sticky too, super. We get our shaved ice and Mini hates that it's too cold. So he begins to ask for a pretzel. No Mini, I bought you a shaved ice, that's what they have here at oahu's shaved ice. Not happy, but not melting down. Yet. Then he accidentally kicks Boy Wonder under the table and Boy Wonder immediately screams at him. Mini screams back and covers his ears. They are now shouting at each other in the middle of a crowded eatery. People around us turn around and stare at the screamfest thats going down. Mini freaks out and runs for the door screaming. Now I have to pause this story to tell you about the location. It is in a strip mall on the corner of two busy roads. Given Mini's proclivities to run into the street I basically have one choice- leave Boy Wonder, my purse, the shaved ice and run like i am on fire. Fortunately I get to the door before he does. I scoop up all 50 pounds of him and take him back to the table, get all of our stuff, and take the boys outside. Mini clings to me, making his upset sounds as we sit. Boy Wonder realizes the gravity of what went down and he truly feels remorse (either that or he knows he wont get his good brother sticker of the day). The shaved ice is nearly melted and I am tired of the prying eyes that just witnessed the meltdown. We get in the car and leave. I take a deep breath and think about my next shaved ice- one that is heavy on the Cabernet and light on the ice...

Smart people say the dumbest things

We've all been there. The college roommate who pulled A's in Organic Chemistry and yet asked the dumbest questions about the world around her. Or the guy at work who was brilliant with numbers and could build a database in his sleep, but when it came to those around him, he had zero social skills and always seemed to say the most inappropriate things and the wrong time. Today I encountered our very intelligent, yet very dumb speech therapist, we will call her Ms. K.

Ms. K works with speech delayed preschoolers for the entire school district. All kinds of kids on the Autism spectrum come to see her, kids with SPD, and of course those that are just speech delayed. So the words that came out of her mouth today kind of took me off guard.

So there I was, waiting in the lobby for Mini to come out of his speech session. Normally we play a game where I pretend not to see him come through the door and then he surprises me at the last minute. Well today was different. Ms. K wanted to talk to me and was trying to get my attention, so I looked up. BIG MISTAKE. Mini threw himself to the floor, crying and screaming in the lobby of the school. I ran over to pick him up to move him out of the walkway so he wouldn't get stepped on. Then Ms. K asked the question I never thought that I would hear from a children's specialist: "what's wrong with him?" Um, huh? Really? You know his condition, you have his IEP, and you know that he's prone to meltdowns. She went on to tell me about Mini's progress and where he's hitting his goals, but honestly I didn't hear what she was telling me. All I could think about was how this intelligent woman could be so dumb.

Breakthroughs

It has been three weeks since we got the diagnosis. Since then we have been have set up an IEP, signed Mini Me up for special ed summer school and special ed pre kindergarten for the fall, and started going to speech therapy twice a week. In the these past three weeks we have had good days and also some very bad days. Today though, was a break through.

 Let me take you back to October when Mini Me switched preschools (pre-diagnosis). I switched him to a more academic preschool which also happened to be the same campus that had the elementary school Boy Wonder (his 7 year old brother) went to. Convenient for me. Bonus! Well as I soon found out this was the worst possible move I could have made. Mini hates change with a vengeance. I spent the first 5 months picking him up from school at least once a week (he only goes to school 3 days a week) and days that he didn't get sent home his teacher would tell me what a tough time he had at school. Monday was PT (perceptual training- bouncing balls, kicking balls, jumping, etc). Mini would lay on the floor and close his eyes. Wednesday was Music, Mini would flop down in the doorway and need to be physically moved. Friday was chapel. Mini would hide under the chairs. Any time he had to transition from the class to one of these other activities he would get very frustrated and lash out. For whatever reason he particularly hates Music. Since today was Wednesday Music class was on the agenda. Joy. Music days are usually the days that I get called. Morning came and went with no phone call. At pick up his teacher told me that he actually walked into Music and sat right down on the bench!!! He didn't participate, but he didn't fall apart either!! He even came home singing a song they had learned about Baby Beluga!

Since Mini was such a good boy in school today I decided to take him to lunch. Now, one thing about Mini is sometimes his sentence structure is hard to understand. All 4 year olds are tough to underdtand at times, but Mini's grammar isn't quite to level of his peers. As I mentioned before we started speech therapy a few weeks back. The first class he actually went off without me willingly. Ordinarily he hides behind me, clutching my leg making noises. And he went willingly! I digress though. So sitting outside Chipotle today we are talking about his day when all of a sudden he says "look she has a dress on". Mini has NEVER used the pronoun "she". Everything was "he" and "his". Part of our IEP was to improve his use of pronouns. And here in front of Chipotle, three weeks after starting speech therapy, my sweet Mini Me used the word "her" correctly. It made my heart skip!

This is just the beginning of our journey, but I will tell you I am over the moon excited about the changes I have seen in my Mini Me in just three weeks. The road ahead of us is long, but I am looking forward to the victories both big and small...

Diagnosis

Welcome to The Sensational Life. This blog is all about our lives- a mom, a dad, and two sons. One of which has Sensory Processing Disorder. So let me start off by telling you all about our diagnosis and our origins into our "sensational life"... Mini Me (our sensational son) was born through totally hippy birth means- drug free, widwife birth, whole food diet nourished. He was almost 9 pounds born full term. A week after he was born, he dropped to 8 pounds and was labeled a failure to thrive baby. Despite my best efforts to give him the best that I could, he got numerous ear infections as a baby,  was diagnosed with asthma at 10 months old, strabismus and esotropia at 20 months (that resulted in 2 eye surgeries), sleep apnea at age 3 (that led to a tonsillectomy and adenodectomy), and now the diagnosis that I have been dreading, autism with sensory processing disorder. In my heart of hearts I have known for some time. He has run from me out of the store straight into parking lot on multiple occasions, put a hamster in the freezer (don't worry he lived), popped the lock on the preschool playground with a stick, jumped off the couch and cracked his head open on the couch that resulted in 3 staples (which he cried for all of 10 seconds over), runs and screams when he's done something to get him in trouble, tries to choke the dog any chance he gets, is prone to violence and screams when he is not understood, dumps every bottle of shampoo/conditioner/shaving cream down the drain when he is in the shower, and has drawn all over my freezer in highlighter. Some of these seem silly, but having an older son I know that some of these things that mini me does just ain't right. And so, swallowing some pride I reached out. First I thought maybe he has a hearing problem because he rarely responds when he is called, so I had that tested. Nope, he hears just fine, he just doesn't listen. Then we moved on to a 2 month process involving a psychiatrist, speech therapist, his preschool teachers, and preschool director. The result came today- mild to moderate autism with sensory processing disorders. It hit like a slap in the face. The sting burned my eyes and my throat. To see the diagnosis in black and white hurt.

Now I have known many families with special needs children. My first experience was when we lived in Texas and I met a woman with two boys, the older of which was autistic. She was amazing. She took life in stride and was (and I am sure still is) an amazing mom to her boys. Nothing ever seemed to bring her down. Then, my sweet little nephew was diagnosed with Autism a few years ago. My brother and sister in law took it in stride and did everything that they can for him. I always admired them for their perseverance and patience even when things were crazy. So you would think that I would prepared and ready to face mini me's diagnosis. Unfortunately for me I was in denial a bit. I thought, he's just a 4 year old and they are all a little jerky he will turn 5 and it will be done. He will turn 5, but it won't be done. There will be speech therapy, special education classes, occupational therapy, specialists, the list goes on and on for who knows how long. I will come to grips with my new reality, but it won't be tonight. Tonight I nurse that sting and throw myself a pity party with just me and a bottle of wine...