Battles

Being A Mom Sucks Part 3 But Sometimes Autism Sucks Worse

/ Gardy Loo Pismire / 1 Comment

I am in the airport finally going home with the tween daughter of the last few posts. I am excited to see everyone when I get a text from B.

Paul attacked me. He charged me and to protect myself I had to take him down to the floor and hold him there.

My adult daughter, Nicole, who is at our house witnessed this and I get a text from her as well.

I was scared for dad. Dad handled it so well but I was really scared.

I hold my breath and die just a little bit more inside.

Several days before I left for Chicago there was another altercation with Paul involving me. He hurt me in a rage while he was trying to get something that I had taken from him.

Paul has always lived on the edge of rage. Since we have known him and brought him home at 10 months old. His first act upon arriving at our home was to toddle over to his brother and throw him to the floor. It has been some version of this ever since. While they are great friends Andre always knows there is a chance that Paul will get upset and lives accordingly. We all do. It is exhausting at times.

At the age of 11 after much grief and debate, we finally broke down and started using meds to help moderate his ever shifting moods.We have a great med doc who listens with compassion and always tries to use the least amount possible in order to achieve stability. That said, we still have periods of paranoid thinking and depression which has worsened as he hit puberty. Sometimes I want to take him off all meds and other times when I think of doing that I am scared about how bad things might become. Worse. Intolerable. Maybe even dangerous.

And now this. Increasing violence to himself and against us. Not horrible…yet…but where do you draw the line? When you love someone, as we love him, it seems the line keeps getting stretched further out. Further out than you would allow for any other person you come into contact with. There is no aggression toward anyone else except those within our family. Yet I worry that if he was ever involved in some sort of police incident he would be killed because he would run or maybe struggle with an officer and we all know what happens to minorities who do so.

My heart feels like it has been shattered in pieces so many times this past year and I wonder if I can find all the pieces to put it together once again. My mother heart, my marriage heart, my lover heart and my friend heart.

I ache to be and feel whole once again.

Mom’s List Two

/ Gardy Loo Pismire / 1 Comment

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I don’t know about you but as a mom there seems to be some sort of invisible list that hangs over my head, flapping in the breeze to remind me of its presence. THE LIST consists of all the things my kids must do at least once so that I can check off one more box that assures me that I AM A GOOD MOM. Trying new food. The latest, purple broccoli….check. Yearly pictures at Sears…oops missed that one…but now that I am aware of that fact by next Tuesday it will be done…semi-check. Playing the piano…okay not ready for Carnegie Hall but does know where middle C is located…check.

Now B is the sports minded one in our family but because two of our three children get crazed if something as small as an ant touches them during recreational sports …trying to knock out the numerous athletic activities…well, its a challenge. If I had my druthers I would just scratch that whole section off THE LIST as several family members consider high quality endurance sports akin to laying on the couch and dipping ruffled potato chips into dip. (the endurance part comes when you have to turn the chip around and dip again being careful not to double-dip) But I have a fear that scratch outs might just not get you into heaven so I persist in introducing my kids to new sports knowing in my heart of hearts that is what all GOOD moms do. This is what lead us to the Gateway Ice Skating rink yesterday afternoon where the kids attempted ice skating for the first time. It was, needless to say, an EPIC FAILURE!

 I will admit that sometimes it seems as though it takes a while for my kids to get comfortable with new activities. First we have to check out each and every toilet in the entire facility. If the seat is comfortable then my kids might give it a try. If not, we are OUTTA there.

Next comes that vending machines. If they have anything gluten free and casesin free then no matter what comes next the day will be considered a success until they actually have to do it.

Finally, throw in a 16 yo cashier who is making minimum wage but will answer every one of the 20,000 questions through at them about the history of the sport, the equipment used and the rules of the sport, then participation is a definite maybe. Better yet, if the cashier can quote numerous safety statstics; then its a go. Yes, even contemplating sports can be an exhausting endeavor.

So after spending 1/2 hour tying and re-typing the skates, using the bathroom…again… and learning to walk on blades the time had come for the kids to make their way onto the ice. If, as the old adage goes, you can smell fear; then the fumes around our family was the pungent odor that follows you about three hours after eating grandma’s chili. You just couldn’t shake it. Feet started going every which way but forward and the sound of buttoms slapping the ice…HARD… reverberated throughout the arena. To top it off, I pulled my back out trying to hold up one child while falling down with another. Mom was done and judging from the little faces surrounding me, the vending machine owner was about to become a very rich man.

Paul put a brave face on and after once around decided taking his hands off the railing was more to his liking.Gracie whined until her daddy escorted her like the princess she is around the rink. But I knew all was lost in regards to Andre when he spent 1/2 hour going 1/2 around the rink with his toes turned in towards the wood paneling the entire time. Never have a seen a child so happy as when he took his blades off the ice. After exiting the rink he looked up at me and said, “Well, those were absolutely the worst minutes I have ever spent in my entire life!” And needless to say,  his assessment didn’t get any better until B bought hot chocolate.

Later, on the way home, Andre talked about the experience. His take? “Well, I am glad that is over. I did it once, it’s a NO GO and thank goodness I will never have to do that again. Now, mom, what else can we cross of your list of things I have to do?”

“What list?”

“You know, the one that you have that makes me try everything for my own good even though we both know I am going to hate it. So really, this list is really about you. Why don’t we just leave it at that!”

And with that he was done. But I’m not. I want to know how he knew about THE LIST!

IEP Services From The School District

/ Gardy Loo Pismire / 2 Comments

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For years we have been fighting our local school district to get our son what he needs in order to learn. Comprehension is sometimes difficult and math often impossible. We have watched him struggle to learn things that others grasp without effort while the school district ignored our concerns. Yet, if he is taught using particular methods he is often able to do the work that is required. Unfortunately, we do not yet know some of the methods that he would benefit most from.

We first realized he was having difficulty with math in first grade. We brought it to the attention of the IEP team. Our concerns were dismissed. In second grade, “It just takes some kids longer.” In third grade, “So he won’t be at the top of his class in math. (Yeah, duh!)” We then paid for him to go to an after school program at the cost of over $400 per month to learn his multiplication tables which the district could not manage to teach him. In fourth grade, he really started slipping but it was “Well, we can’t do anything now because he isn’t failing.” The rage I felt was immense. We were trying to be proactive but the district wouldn’t take our son’s lack of being able to understand and apply concepts seriously. By fifth grade they couldn’t quite ignore it anymore but their solutions and IEP goals were meaningless. He is now in 8th grade and doing math at a 4th/5th grade level. SIGH. I can also say the pathway has been similar for reading and comprehension but not as difficult or severe. In retrospect, the things we would do differently are numerous including taking the school district to Due Process. But the end result is that we have refused to sign his IEP for more than two years and continue to work with an outdated one.This, of course, is beginning to make the district nervous for what it means for them should we instigate legal action.

One of the things we have been fighting for is a GOOD educational/cognitive/psychosocial assessment of our son as we have disagreed with the district’s findings. We feel this is the best way to discover the issues that are effecting his learning and how he needs to be taught to reach his full potential. We have had a well-known and respected doctor in mind to do this assessment who specializes in kids with multiple “things” going on and have been fighting for the district to get him seen by him. Thus far the school district has refused citing their policy (which is illegal, BTW) that IEE’s must be performed within 60 miles of our home. If you understood where we are located you would also know that these types of services are not available here.

It has been a long, hard road with often disappointing results and constant stonewalling from our school district. But after all this time we were just notified that they have agreed to this testing and with it comes a very belated victory for our child which has cost him dearly due to these very purposeful tactics and delays.

Unfortunately, no family should have to go through this. Yes, we have at times hired a lawyer to push our case but the cost is immense and we see very little action for the money spent. School districts often stonewall because most parents cannot afford legal services, they don’t understand the law and districts know that most parents get weary of fighting “the machine” and give up. It’s hard not too. When you are already struggling at home because of the way your children’s disabilities impact your home life taking on a huge school district seems impossible and the educational system counts on that. Yet, by not doing right by our children it puts a future drain on our economy because these kids get discouraged by their lack of understanding/comprehension/accomplishment and drop out of school. They then face a life-time of unemployment or underemployment and the use of social services that could have most likely been avoided had they had some measure of success in school. Prison and gang activity is also a direct measure of the failure of the educational system.

I wish I could say it has been easy but I can’t. In fact, fighting this battle against the local school district has contributed to our ‘almost divorce.’ But I do urge all parents out there to continue to fight for their children’s place in the educational system. I have to believe that eventually we will make a difference.

 

 

YOU ARE THE JUDGE, JURY AND EXECUTIONER

/ Gardy Loo Pismire / 4 Comments

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This weekend I was on trial. YOU KNEW I have been having severe pain for weeks and was having it when the “incident” happened. You knew my cousin was visiting but you would not step in and control the boys when they were so out of control.  You did not step in to help but instead chose to sit in judgement me when I finally lost it. And I didn’t even yell. NOT ONCE. How dare you!

You say,” I don’t know if I can live with you because you yell too much”, so I quit.Now its, “I don’t know if I can live with you because you sound stern and mad and point your finger.” How would you like me to handle discipline in our home so our kids know that things are a serious matter? Smile sweetly and in a chirpy voice say, “Oh please, sweet boys stop what you are doing. I beg of you?” UGH.

I am NOT your mother. You are NOT my son. I am who I am. A person trying their best. Changing. Me Changing. Yet somehow it always seems as though I am the person in this relationship needing to be the one to change…what about you? Are you putting as much effort into those things I told you I would like to see you change? Let me answer that for you. NO you are not.

So let me in on a little secret. People get upset. Yeah I know you don’t like to because you want everyone to like you especially our kids. Our kids who know this is your weakness and exploit it. Our adult daughter who admits this and says it sucks for the adult but is grand for the child. Guess what, I have emotions that I show which make you uncomfortable because you don’t or won’t show yours because your mother punished you for it and you are afraid that will happen with me. No insist that it will/does so you use it as your excuse not to figure out who you are as an emotional being.  And yet you stand in judgement of me. And if I don’t do what you want, what you need, then you will leave. But surprise it might be me whose ass is hit by the door on the way out because I have to be who I am and frankly it ain’t so bad. Sure there are things that need refining. But at least I feel. At least I can say what it is I know as my truth, my faults, my goods and my bads.  I show those sides of me and no one has to spend their energy trying to guess what it is going on inside my head.

And surprise, here is one for you…often I can even understand why you feel the way you do. But just because I speak my truth in the way I do and you get flooded…that has nothing to do with me but with your relationship with your mother and I cannot deal with that because it is your issue that you do not want to have to look hard at.

And so I go to my therapist and we go to joint counseling but when are you going to go down deep and work on you? I’m trying to change for me, for us and for our family and to do so I am having to go to places I don’t want to examine but I do it because it needs to be done. When are you going to get brave and do that too? When are you going to really look at how your past is effecting our lives now and in the future?

 

Renovation

/ Gardy Loo Pismire / 1 Comment

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As the months have gone by I have come to realize that a “maybe divorce” is analogous to the dismantling of a house. Most “maybe divorces” appear to me to work in this way:

1.You take down the house slowly brick-by-brick until you reach the foundation and realize that no amount of structural engineering can save it. You then buy two very civilized but individual abodes one stuffed with everything from the marriage and the other devoid of all that it stood for.

2. You blow up the entire structure leaving a giant gaping smoldering hole in the ground with both parties going their separate ways clutching whatever they could find in the ruins. Little is wanted or salvageable.

3. Or you renovate over time; adding on a little here or taking way something there, until something new materializes that you recreated together.

Our “maybe divorce” appears to be going the renovation route which is in some ways not surprising. After all, we have built two houses and a winery during our time together. Our shared history includes a hand-dug out basement using just shovels, our bare hands and a wheelbarrow crafted just like smugglers tunneling underneath the US boarder.We are good at sawing, hammering, planting and building huge retaining walls to hold back all the dirt. We excel at seeing one thing and turning it into another. Our life together has been one big “honey-do” list. And then, just as a project came to fruition, we would always move for the sake of B’s career. All the time and effort down the drain but at the same time offering a chance to start over and reinvent our lives.

Today we live in a tract home. It’s identical to so many others on our street. Nothing outside gives an impression of who lives under the eaves. Being architecturally unique is no longer part of who we are and I miss that. Our renovation seems anti-climatic as we chip away at the old broken tile that covers the surface of our lives and pull up the carpet hoping against hope that there is an undiscovered wood floor residing beneath. And while we find some cool relics from the past as we dig around, the treasure we seek seems to be so well hidden that sometimes it seems as if we may never find it despite our best intentions.

Of course, all this renovation comes with a price. The foundation we once thought stable needs shoring up. We fight among ourselves over what we keep and what we let go. The professional “fixers”charge by the hour and cost overruns are the norm. Load bearing walls stay high while other less-necessary walls come down only to go up in some different form again. And the construction dust/debris covers every surface of our lives as we work within the confines of the boundaries of the house to create something that has a better flow. And so it goes.

Yet, recently it came to my attention that with all the care we are putting into our new creation we did forget one tiny but important detail.  We forgot to ask the real question…the most important one…is this the right house in the right location in first place?

I suspect only time and the heart will tell.

 

 

 

I Must Be Having A Ying/Yang Kind Of Day…UNPROTECTED

/ Gardy Loo Pismire / 1 Comment

Unprotected

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Our relationship was unbalanced from the beginning.
You used me to do your bidding
Keeping yourself unblemished
While I fought your battles with your mother
And your family… one in the same
For you did not want to be tarnished
You did not want to take the chance to express or expose yourself
So I took chances for you
And expressed your thoughts when you couldn’t or wouldn’t.
I protected you when you could not protect yourself
But again and again you have thrown me to the pride
Your relationship with them built on my back
So you are the hero
I shouldn’t have fought those battles for you
I was young, naive
I thought that was part of what love was
Protection and standing up for the one you love
Now you have the luxury of blaming me
For the way things are
I wear the scars from those battles
And you run free
While I crawl away from the wreckage
My back unprotected by you
You have failed to stand up for me
You’ve had 30 years of opportunities
But chose not to use them
And all these years later
I stand here defeated and alone
And you wonder why
I feel disappointed and unprotected