Life long disabilities do not suddenly end at the age of 18

Three weeks ago, my son, benjamin, had a major panic/anxiety attack in Costco. Benjamin’s panic attacks do not involve flight, they are fight. I was with benjamin (19) and Keats (22).

I usually have indicators that Benjamin in having a rough day and do not take him out. He was not giving off any indicators that day. In fact, he was having a great day.

During this same Costco trip, there was a child who was yelling in the store. Not just a random yell, but consistent yelling in the store. Knowing this is a trigger for Ben, Keaton and I were keeping him as far away as we could. Unfortunately, the yelling was heard through the ENITRE warehouse. Ben had his headphones and music on, we told him to turn up his music.

Ben passed many children, we live in the land of epic reproduction. Seriously, 17.6 births per 1000 people. National rate is 12.5.

Yeah, lots of children.

cdc birth rates map updated

Ben did not even glance at these kids, they were not out of control.

As we were standing in the food court line, second in line with a young child in front of us, the mother with the yelling child got in the check out line directly behind us. The child was still yelling.  Ben took off and slapped the child.

He got away from me, he got away from Keats, and he slapped her.

Should he have ever touched the child? NO, absolutely not. The child was not at fault, the mother was for lack of parenting the child.  Did we do EVERYTHING we could to prevent it? YES. I left the store with blood dripping down my shirt, bruises and scratch marks. He was not going after the child after the initial contact, he was literally sweating, his pupils dilated to the fullest size and not even with me at that moment, I was trying to bring him back.  The mother said “she is just a child!” I asked her why she allowed her child to yell throughout the entire store, her lack of parenting makes it so I cannot bring my son out anymore. I did not stay and talk to the mother, at that point all my attention was getting Ben out of Costco. I am certain I appeared very heartless and cruel.

I understand people will want to know why we did not leave Costco as soon has Ben’s panic attack started, let me explain why. Ben has Autism as well. Not ‘on the spectrum’, not ‘high functioning, talking to us, in main-streamed classes.’ Ben has moderate/severe autism . Once we tell Benjamin the plan, we cannot vary from it, if we had left the store without doing the whole Costco routine, which involves the food court, I would not have made it home safely with him in the car. Ben also lives his life through Disney movies. Every situation he has a movie scene for, he answers in movie lines quite a bit and requests things in movie lines. He can answer yes and no questions, and answer questions when given choices as he is also echolaic.  When Benjamin slapped the child, he was enacting a movie scene.

We have been taking Ben to Costco for 17 years without incident. We also understand that because this happened, even once is too much to take the chance again and have not nor will not bring him back. We decided this the day it happened.

Three weeks after the incident, I was at Coscto with my 3 daughters. My 20 years old (nonverbal autistic who also has issues with yelling children, but hits herself, not others), my 15 and 13-year-old. As I checked out, I was told there was a block on my card. After checking and not finding out why, the assistant GM said he would go and check it out. I proceeded to the food court line, because Emma also has a routine that must be followed, and was walking out the store by the food court and cashiers when the GM told me I was blocked and banned from Costco. Obviously, this is not the most conducive place to have this conversation. I was not contacted before this point, I was not asked for my side of the story, I was not allowed to explain the situation at all. I understand the phone number on my account was incorrect, but a phone call is not the only to contact a person in 3 weeks.

I returned the next day to speak with the GM, but spoke instead with the assistant GM. He told me I was never banned from any Costco, I and my daughters can tell you that is not what I was told, my membership was reinstated and I was told to call the Senior VP.

I spoke with the Senior VP, the child who was slapped by my son is an employee’s child.  He told me Ben could still be charged with assault and child abuse, two felonies given Ben’s age, if the employee chooses to pursue it. The police have also been advised of the situation. I was also told I would be receiving a letter from their legal department about Ben and protocols.

Here is my question, disabilities do not stop once Ben became an adult. He is not suddenly cognizant of his disabilities nor does he understand felonies, child abuse, or police questioning. This is the first time Ben has ever struck a child in public. Ben is on meds to control his anxiety, but because he is not neuro-typical, we have a challenge in getting the correct dose and maintaining.  He is finally in the intake process for services from DSPD, after 6 years of waiting, we have gone to his psychiatrist to change his meds since then, we have not been back to Costco, and select times we do go out to places because we know there are so many children where we live.  We are doing everything in our power to be responsible and still allow Ben to live a productive life. When does the responsibility lie with the parents who do not discipline or control their children in public? They are allowed everywhere and I am not the only parent with children like Ben and Emma.

We have taken Ben many, many places, states, travels, ferry rides, Pike Street Market, national parks, rec centers, restaurants, and libraries. I have worked with Ben since he was young to behave in public places.

We have been places where a child is yelling or starting to throw a fit, and I go and talk to them and explain that what they are doing is hurting my son’s ears and could they please stop. I point out Benjamin to them while kneeling down and talking. And you know what? Every single time the child has stopped. I thank and tell them how much I appreciate them.

Children listen. They learn. They want boundaries.

My son and daughter want to be able to go out and do things that they enjoy.

Where is the balance? When will we reach a tipping point of children not being parented?

Until we do, Benjamin’s life has changed again as we try to figure out the best way to let him live his life and still deal with parents who do not take responsibility.

Also, we plan on leaving the reproduction capital on the nation, we just have four more years until we can, and think we need to find the following place to live.

Image result for retirement communities

 

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Disabled siblings are not always the bomb

living with an active bomb that can explode with or without warning affects a person.

Image result for active bomb

*actual size of bomb sibling represents.

Keaton, Rosy, and Ella have lived their entire lives with this.

last night, the hubby and i decided to try a date night.

5 minutes after arriving, i get a marco polo from rosy asking if the stain had always been on my comforter, or if she needed to take it to the wash.

the stain? poop.

the culprit? emma.

the answer? no, that is an old stain from the last time emma got into her poop and used my bed as a tissue.

the result? rosy wiped, bathed, and dressed emma. all within 30 minutes of us leaving. (emma is 20)

not exactly the way a 15 year old wants to spend her saturday night.

1 hour into our date, we get a phone call.

“the internet just went down.” rosy said on the other end.

active bomb just went on high alert.

“we are coming now.” i said. we immediately got up, and ran from the restaurant. we were only 10 minutes away.

phone rings again.

“ben hurt keaton, we got him into his room.” rosy called.

“do not let him out until we get there.” i said. “you are doing amazing and have handled this perfectly.”

we have ben’s room set up as a safe room. safe for him and safe for us. it locks from the outside.

when we got home, keaton had already gotten the internet back up and running, ben was still in his room, and Mark and I were taking over.

keaton, rosy, and ella, knowing the routine, got me the gear needed to protect me for deactivating the bomb named ben.

leather jacket, leather gloves, batting helmet, catcher shin guards (ella puts these on me while i get the rest of the stuff on.)

Mark gets ben’s meds together, and we go release the bomb.

emma came running upstairs with shorts, shirt, and flip flops ready to hit the road. unfortunately, it was snowing and the attire was not good for a get-away.

it took all of us to talk her down and get her to stop hitting herself.

1 hour later, the bomb is defused. this is the third time this week we were on defcon 10.

“when this is happening, i just keep thinking ‘there is no way my friends can even understand what happens in our house’. “rosy said.

“i think the same thing.” ella said.

it turns out, 30 minutes after we were gone, keaton had to wipe ben after he pooped. (keats is 22, ben is 19)

the life of a sibling with disabled siblings, is not glamorous.

i know life is not easy for my kids that are not disabled. i know it has made it so they have a hard time connecting to kids at school. it has aged them before they should be aged. it has made them view life differently. they have fun with their group of friends, but they are not the giggly, care-free kids i wish they could be.

i wish they did not see bruises or scratches on me.

i wish they did not have to cry when things are at their worst.

i wish the panic attacks i see happening to rosy when things get bad, did not happen.

i wish i could take every single hurt they experience away.

until then, i think i am absolutely the luckiest mom to have some ridiculously amazing kids.

who, i am certain, could work on any bomb squad unit.

 

Image result for bomb deactivation unit

what’s hard vs what’s easy

easy: eating an entire package of chocolate covered graham cracker cookies.

hard: feeling bad about it.

guilty

hard: telling yourself it is a good idea to get out of bed in the morning knowing that it just groundhog day all over again.

easy: remembering how much i hated groundhog day.

deja-vu

easy: convincing everyone cereal is a nutritious dinner, so are microwaved frozen taquitos.

hard: planning a decent dinner when pinterest lies to you 90% of the time about just how ‘easy and fun’ those ideas are.

time

easy: when everyone and everything in your life at the moment is going well. no one is in jail. no one requires medical attention. no one is in the principal’s office. everyone is fed. the house is even cleaned. so good, that i am personally calling the United Nations to tell them i really can fix all the problems in the world good.

hard: reality hits.

reality

easy: just give up and refer to the first easy listed in this post. you earned it. pretend life does not exist beyond your bed. pretend that you don’t have to deal with the general population seeing your children as so disabled, that they don’t get to have a say in the very basic choices in their lives. oh wait, that is their father (rude). pretend that your 18 year old, who has had months of absolute fantastic behaviors, suddenly regresses that past three weeks culminating in him head-butting you so hard in the pizza factory parking lot that you got to hear your nose cracking. i personally loved the parking lot setting, very outsiders, stay golden pony boy.

hard: getting out of bed and still walking that sexy walk every single day. so to anyone out there working the hard part, get out and get your sassy on, but first refer to the first easy listed on this post, consume, then go get the sassy on.

sassy

booby war continues

as you are aware, we have had fascination with boobies and all that goes with it for a while.

while swimming at our local rec center, benjamin, was delighted to see that the woman with the biggest breasts in the entire rec center and smallest bikini top come into the hot tub where he just happened to be relaxing.

me?

not so much.

“benjamin, don’t stare.” i reminded him.

and bless his heart, he did not, though it was an epic struggle.

i was feeling pretty good about our trip to booby paradise and thought we could leave the rec center having not made anyone uncomfortable and our heads held high, that is, until we were putting on our shoes.

“boobies!” ben said while pointing.

i turned to look and see him pointing at a man, who did have boobies, but probably did not need to have that fact pointed out.

another rec center, another walk of shame.

shame

on a different note, i looked over at emma during church yesterday, to see her reading her book about lizards and their mating rituals.

it was the most enlightening moment i had in church.

change

that’s not confrontational

you know what? the world stinks if you are considered disabled.

it gets a little bit stinkier if you are non-verbal and therefore considered voiceless.

and it gets the stinkiest when people insist you are more disabled than you are therefore holding you back from your full potential.

i was told using ‘you’ in a sentence was confrontational when describing the situation.

that’s not confrontational, what’s confrontational is the whole time i was talking to you, i was thinking you looked like gary shandling with a tan.

gary

“she will be a child her whole life.” i was told about emma and why she cannot decide whether or not she wants to go somewhere.

“even children get a choice to say no.” i countered.

“no they don’t.” i was told.

“i don’t know about you, but i do give my children quite a few choices.” i replied.

those of you who have been reading this blog for the long haul know there have been ups and downs with emma. know there have been grieving processes and celebratory jumps. yesterday i found myself grieving a little more.

when emma turned 18, i genuinely, truly, sincerely, thought she would have a little more voice. a little more freedom, and little more rights.

guess what?

she doesn’t.

it does not matter if she does not want to go. it does not matter if we have to force her out of the car. she should have a choice not to go. one choice in the mid-week visit is all that was requested.

being non-verbal does not make you silent, and that is the biggest travesty of all.

it does not matter. her voice does not matter.

and that, gentle readers, makes me confrontational.

angry-eyes

luckily i packed my angry eyes.

your mom walked on the moon

this weekend, walking on the moon seemed like child’s play.

the berlin wall coming down was like taking candy from a baby.

candy

living in space for 1 year was like having a maid, cook, manicurist, and pedicurist waiting on you all day, every day.

the manny/mayweather fight was like watching an episode of barney.

manny

this weekend i measured pancakes with a ruler, then figured out the measuring cup to use to make 4″ pancakes.

i figured out 3 oz of hash browns into measuring cup measurements.

i figured out 55 goldfish is 1/2 cup.

27 cheetos puffs are 3 servings.

i counted gol’ darn chips.

individually.

this weekend, during my silent freak-out all night long, i was fairly certain i put benjamin in a diabetic coma because he had a low blood sugar reading at bed time.

then he slept in till 9:30 the next morning, solidifying my freak out.

i am finishing up legal guardianship for emma, dance for emma, dance for rosy, end of school year projects for ella, emotional break down for rosy, track practice, softball practice, track meet/softball tournament on the same day, and keats is still looking for a job.

HIRE HIM!

this weekend i felt like this:

cat

but by golly, there is not a carb that has not been counted.

atkins diet never looked so appealing.

labeling, it’s not just for cans of soup.

i have children that have disabilities. so what? i am one of millions.

i have children who are labeled because of these disabilities. that does not get to go into the category of ‘so what.’ they are not a product.

they are rather unique. summer-fun-091 they have to be, this is an actual picture of the hubby.

i feel like i do a good job treating them as individuals, not labeling them or boxing them into areas that i feel they will do the best because of their disabilities.

this week, my son was hospitalized with onset type 1 diabetes. we were fortunate to catch this very early as benjamin is what i call a ‘free range urinator.’ meaning, he does not feel the overwhelming need to make sure all urine is in the toilet bowl. because of the free spirited peeing, i was able to notice his urine was becoming increasingly like cleaning up sugar water.

as we were heading over to the emergency room, my first thought was “there is no way we are going to be able to do this, he will not be able to handle the shots, he will have multiple melt downs, his life just got so much harder.”

basically, i pictured this the rest of our lives, multiple times a day. wwe after taking 5 people to hold him down just to do a finger prick, i felt my psychic abilities were spot on peering into the future for benjamin. but then he surprised us all, with the help of some valium to start.

benjamin is a rock star about taking shots, he astounded us all.

he even let his blood be drawn, and that is basically like Jesus raising the dead.

i had thought, judged, labeled, and had him wrapped for delivery before we had even started. gift i’m proud of that kid; proud that he can still show me what an idiot i can still be.