Never is a very long time

I have said in the past “I could never do that.”

Few things last as long as never.

Benjamin attacked Emma and suddenly what I could never do became something I have to do.

Suddenly I find myself looking for a residential home for Ben to live, suddenly I find myself trying to come to terms that there are five other humans in my home that need me just as much as one, and that one is a danger to the five others.

My oldest asked me why this was finally the breaking point for me when so many other bigger things over the years have happened with Ben.

It is a valid question.

Sometimes it is the smallest things that cause the biggest catalyst. This was one.

Image result for catalyst

The home that seems to be the best fit for adults like Ben and have the highest success rate is 3 hours away.

3 hours.

I also know that for Ben to be successful or have any chance of success, I cannot see him for at least a month and chances of him coming home again, even for an overnight visit, are very unlikely. We will see him, we will go however far we have to, we will do whatever we have to and make sure Ben succeeds and thrives.

As I have watched Ben this past week and have seen the progress he has made in the past six months, which has been huge, I begin to waver, question myself, think once again that I can do this, I can keep everyone safe.

Then Ben attacks me yesterday and my 17 year old daughter jumps in to fight him off me. How do I let this continue to happen? I cannot.

We will have to learn to live again. For 10 years we have lived outburst to outburst. Our lives are scheduled in two hour increments. We live on alert everyday.

For 23 years I have lived in a different world then many of the women I know, starting with play groups, mothers sat and visited while their kids played, I was chasing mine around. To grade school, I was dealing with IEPs, private schools, and self contained classrooms, to high school, to something as simple as a dinner date with friends, to adulthood, college, marriage of children and grandchildren, to extended family get togethers, I cannot tell you the last one I went to and was able to sit, visit, or stay. I will have to learn to live again as well and quite frankly it terrifies me.

I am terrified.

So, what I was certain I could never do, I am doing, and it is truly the hardest thing I have ever had to do.

 

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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

 

boobies

the bear is your typical, red-blooded, hormone driven teen-age boy.

he is also your normal, red-blooded, autistic, non-filter teen-age boy.

when these two worlds collide, be ready for the summer of boobies.

we went to lava hot springs last week.

or, as bear seems to think, bikini wonderland.

“belly buttons!!” he told me while walking in.

“yep, that is a nice belly button. don’t stare.” it seems to work better if we acknowledge his belly button find.

he has also learned to power of the swim goggles.

he likes to float around with his floatie around his middle and dive under with his goggles when the girls get close.

we spend a lot of time pulling him and his goggles away.

at the lake, as i was cleaning things up to head home, i looked over to see bear bending over examining a belly button very closely.

the girl had no idea a 6’1″, 237 lb hulk was checking out her belly button as she was blissfully tanning with her eyes closed.

her family behind her did, and they were laughing their heads off.

me?

not so much.

i got this picture when bear realized there were girls sitting across from him and suddenly decided to sit on the edge of the hot tub.

005

helloooooooo ladies.

i should feel some responsibility of my own in his ogling trait he seems to have inherited.

i did a bit of that myself when a walking photo shop of a man walked into the pool.

i am serious, he looked like he had been photo shopped, he was that perfect.

before you judge me, the happily married man playing with his kids next to me also thought this man was exceptional.

how do i know this?

probably by the holy trilogy he uttered as the man walked in.

i have learned in this whole puberty shenanigans with bear, that is does not matter if the dude has mental disabilities or is as normal as corn in kansas, boys will be boys.

puberty

 

 

life lessons learned yesterday and today

we planned a lovely picnic  today up the canyon at our favorite park.

our van had other ideas and refused to start in an act of outright rebellion.

i hate this van, i loathe this van, i would give this van up for adoption without blinking an eye.

in fact, it gives me angry eyes.

in its defense, the van was finally just giving us what we rightfully deserve after years of abuse and use.

unfortunately, bear did not understand why the van was not working and let it be known…..

immediately.

here is where some life lessons were learned.

1) my son can really hurt me physically.

2) not only did it cause physical pain today, it caused my heart to break.

3) my son and daughter had to step in to help get their brother to stop hurting me.

4) this broke my heart even more.

5) once i let my tears come, which is rarely, it is very hard to stop them. it is like a damn that has been holding everything back that suddenly broke and i cannot stop the flow.

6) i realize that i have amazing children who can calm their brother with patience and maturity beyond their years.

7) this is not to feel sorry for myself, this is simply how it is. my heart does hurt, my heart does break, i do wonder if i am doing enough for my children and when it is all calm again and another storm has been weathered i realize we are closer than we were when we started.

and finally the most important life lesson learned:

8) just because you find a rabbit in a park and bring it home in a build-a-bear box does not mean you are magically a rabbit owner.

the only rabbits allowed in this house must look like this:

bear’s first hunting trip

bear went hunting on saturday.

while walking he found a cluster of deer, took aim, and shot.

his hand was steady as he scoped his shot before opening fire.

sadly, although his aim was true and the rapid fire shooting action was accurately depicted with sound, the deer just stood (one was laying down) and stared back at him.

they don’t make finger guns like they used to.

little things

i am grateful for queen and bear in my life, they make the little things so much sweeter.

1) calling bear and hearing him say “i’m coming.”

2) waiting for queen outside the bathroom at church and when she did not come out i went in to find her sitting in the rocking chair used for nursing mothers with her skirt thrown in the middle of the floor. why am i grateful for this? last time she did not like the clothes i picked out for her, she threw the dress in the garbage on her way out of the bathroom wearing  only underwear and a shirt to great the waiting public ………big improvement this time.

we agreed that i would not make her wear the skirt again.

she can say so much without ever uttering a word.

power to the queen.

3) in the middle of bouncing on the exercise ball last night bear made it explode, landing on his coccyx (thank you napoleon dynamite granny for teaching me that word)

laughing while walking away rubbing his buns. when he sat down to watch tv he said “oh…..i ache.” these are words i did not even know he knew, let alone knew how to use in the correct context.

these are little things made beautiful that i would not have paid any attention to before but that queen and bear have gifted me with……gratitude. without even knowing what they were doing, they have taught me gratitude and to take the time to really notice what matters……..in-and-out extra greasy burgers.

and here you thought i was going to get all mushy on you.

PUH-LEEZE.

comes without filter, installation required

bear has gone through some interesting phases.

there was the insisting he should only wear a robe all day every day. that lasted about a week.

then there was the time that once the car was in the parking spot, there was no reversing to correct………ever. that also applied if you were pulling out of the driveway to leave, you MUST NOT pull back in for any reason, even if you forgot something……..EVER. that lasted years.

but now, now we are entering in the puberty stage.

how did i know we were entering the puberty stage? when i went to the store to buy queen some underwear and bear was with me, one look at the package cover and he was bent over grabbing himself saying “help me!!!” and just like that i had a pubescent 13-year-old.

i mention this to explain my following letter to the two women at the pool.

dear ladies who thought they were in the Caribbean,

i am genuinely happy that you have the bodies that look like you only eat once a day, and by eating once a day i mean an orange that you moved by your nose while saying “mmmm, zesty!” and then considered yourself full having never even taken a bite here is what i do not understand.

why in the diddly-hell did you feel the need to lounge by the kids section of the pool in your triangle-barely-there-string bikini?!

are you trying to impress the 5-year-olds?

maybe the teen-age life guards?

maybe the average mr. joe plumber who just looked at his average mrs. joe plumber wife and dreamed just a little?

please for the love of all that is holy and stretch-marked put some damn clothes on.

oh, for the days of full swimsuits.sincerely,

the mother of un-filtered 13-year-old boy.

that’s right, bear does not have a filter. if he sees something he likes (like belly buttons) he points to that belly button while saying “look mom!!” with me dragging him away telling him we don’t point, and yes i see, and yes i see what it does to you.

bear is very kind that way, if it is something he likes, he just assumes every one will like it too.

given the pool side fashionistas, we are  doing a lot of dragging at the pool these days.

it does not just keep to the pool. have you ever really looked at the disney characters? belly buttons galore, not to mention tiny waists and well-defined boobs. it has made me realize two things: 1) movie time just changed drastically for bear. and 2) there are a lot of disney animators with unfulfilled teen fantasies.

i know eventually we will get the filter installed with bear.

and i know that this is a life-long thing of admiring belly buttons and boobs.

how do i know this?

i am married.