Autism

Holes… Or When I Am Gone

/ Gardy Loo Pismire / 2 Comments

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Me: I am going to miss you when I am gone (B and I are going to SLC this weekend)

Andre: I’ll miss you too

Me: Why will you miss me

Andre: You do my laundry, you cook for me, You make my lunch

Me: Is the only reason you’ll miss me is because of all the things I do for you

Andre: Well, to be honest it helps
Me: So what are you going to do when I am not able to do those things for you
Andre: Well, I guess I will get married

 

I love my son. Truly I do. But because of his autism everything to him is from a “what are you going to do for me” perspective and very rarely a “what can I do for you” thought even occurs to him. The one daily chore he is expected to do is often a battlefield and it doesn’t matter to him that everyone else is doing their part. This lack of reciprocal interaction or loving behavior on his part often makes me feel hollow inside.

With most children you have some sort of back and forth relationship. A relationship in which the child wants to please the adult in their life and vice versa. Usually it’s a fairly balanced equation. We get something and we give something back. Even if that something is just a touch or a smile. That just isn’t really important to Andre. He spends more time figuring out how to get his way at all costs than ever considering the fact that sometimes people need a hug or a kind word to keep them going. This “I give to you and you give to me” thought process never occurs to him and sometimes it gets very old. Sometimes it feels like I am doing all the giving and getting little to nothing in return. When this happens it feels like a day spent outdoors in the hot sun just digging hole after hole after hole.

For me, this is one of the hardest parts about autism; this “I don’t give a shit about anyone else but me” thought process. Give me a monster tantrum anytime. Give me nonsense talk too. Give me the messy room, the sneaking food upstairs and the snarky comments. I can take all those and more. But sometimes what I long for is just a genuine back and forth dialogue lasting over 5 minutes followed by an Andre initiated hug at the end of our time together.

If I could change how autism looks in regards to my son this is what I would change. And who knows maybe this will click into place for him someday. Until then, I will sit here and wait knowing in my heart of hearts that even though he rarely shows it that my son really does love me. For that is all I have to sustain me at the present time.

 

 

 

Going Away

/ Gardy Loo Pismire / 2 Comments

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As you have probably figured out my birthday is coming up this week. I find as I get older they are harder to swallow. On the one hand they mean I am creeping closer to death with many goals unfulfilled but on the other hand the alternative is not attractive. Frankly,  I am so grateful to be alive after all my body has been through. I realize that had I lived in other places that lack the type of health care I receive that I would died long ago. That is a sobering thought.

This year I seem to be doing a lot for myself for this birthday. I blame this on my therapist who keeps telling me that I need to take time for myself and do some self care with all that is going on in my life and that maybe divorce looming deep and dark everyday. I need a lot more sitting quietly with myself and a touch of zen. Getting to this point is somewhat of a miracle considering I have been a mother for over 33 years and doing things for everyone else. If I am honest sometimes I would just like a break from all the challenges that accompany motherhood and autism. So later this week I am going to take a well earned one. I am going to the ocean later in the week and B will be working part time so that I can do this. (Bless him)

I love the ocean. It makes me feel renewed, fresh, inventive and intuitive. It sharpens my pen and my mind. While there I plan to:

Read several books

Sit on the sand and watch the sunset

Sleep as late as I wish

Go watch the baby seals

Sit cliffside and watch for whales

Hike along the cliffs

Go swimming

Take naps

Meditate

Tend to the garden

Work on my novel

Sleep in the nude

Listen to actual records from my collection

Maybe put together the outdoor furniture if it comes

Take myself to dinner every night

I might even sit at a bar and flirt a little (if I can even figure out how to do it since it has been a lost art form for the past 30 years)

 

I have to confess that I am a little nervous about this. I have not been alone for an extended period of time since…well, I don’t know when. I can’t even tell you if I have ever been and I am concerned I will either go stir crazy or I will discover that I drive myself to distraction. Can you get sick of yourself? I guess I will find out.

I am also looking at this time as precious and nourishing to my soul which makes me excited about the possible discoveries I may make. I hope ideas percolate to the top giving me greater clarity about the things I need at this point in my life. I hope that I feel a sense of peace and tranquility that is often lacking in my life as I run to schools, doctor appointments and the like. And I hope to tap into those parts of me that have laid dormant for way to long.

This is my time and I plan on taking full advantage of it!

 

 

 

 

 

 

 

The First Rose

/ Gardy Loo Pismire / 6 Comments

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As parents we are always doubting ourselves when it comes to our kids. There are no manuals and every child is so completely different from the other especially when they have issues that other children never have to face. I know of what I speak. With six children I have learned much and each one has taught me in a completely different way. Yet, I also know about those deep, dark, slippery wells that you sometimes feel like you cannot climb out of  when things are tough which often seems to be the case when your children have life impacting disabilities. It makes you question yourself and all you are doing to an even greater extent than ever before.

Paul struggles. He has autism and several other medical issues but his social skills are pretty much on track. Until you are around him for awhile you would probably never guess the extent of his issues and how they impact him everyday. But impact him they do. And our family too. Constantly.

Sometimes parents whose children have a disability find it hard to let go. Sending them to the store alone, even though it is just down the block, is terrifying when you know that your child is somewhat gullible and naive. But when the older teen years hit you realize that holding on too tight is a hinderance and not a help so you start loosening the strings. So recently Paul has been walking to the store by himself which gives him a sense of freedom that any 15 yo boy needs.

On Sunday Paul asked to go to the store. He had earned some money and wanted to buy himself a special snack… so off he went, hands deep in his pocket holding on to his hard-earned cash.

About 15 minutes later he returned with a perfect red rose in his hand which he shyly gave to me.

“I know I haven’t been treating you very well lately so I bought you a rose to show you how much I love and appreciate you”

I cried. He smiled and I think he knew that in giving me that beautiful rose he actually gave me so much more than just a flower. He let me know, that despite my mistakes and frailties as a parent, I really am doing something right by my kids. And even more importantly, I see him growing into a lovely young man who is doing good things like every decent and wonderful human being does on his own and without my help.

God, I love that kid!

 

Sizzle

/ Gardy Loo Pismire / 7 Comments

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The other afternoon B and I were stretched out on the sofa just enjoying the time spent together when all of a sudden he did it…one small touch sent sparks to my nipples and I groaned. Not one of the quiet as a mouse groans but the kind that radiate deep below your belly in that soft and slightly wet place that knows you are suddenly exploding into sexual awakening and just wants to help get you in the mood…quickly!

“What was that noise?” Andre yells down from the family room upstairs. “Did someone step on the dogs tail again?”

Oh, God, please …. NO. Stay upstairs. JUST STAY UPSTAIRS.

B reaches for me and all the struggles of the past year seem to melt away. I am happy that we still have this lovely hot connection. A place where we can “get into” each other once again and let our hurts vanish for awhile.

B starts to put the tease on me. His kisses yield my body and I melt into him. He begins brushing me softly and then with slightly more pressure, so that my back arches higher, wanting to him to reach those high places that often get ignored. Another audible sigh starts in my toes with its attending electrical current snapping awake those parts of my body that are still in “kid induced limbo” and escapes from my lips…”ohhhhh…myyyyy” I whisper with delight and a sense of impatience. To borrow a phrase from my friend, Marvin Gaye, “Lets get it on!”

B gets the hint and  whispers “Come on baby, lets go upstairs.” I consider the odds of completing this fantasia while our children are awake. One kid, the most perceptive one is gone. According to my calculations that gives us delightfully low only  661/3% chance of being interrupted or “caught.”  A bookie would faint with those odds at this house.  I quickly decide its a chance I can live with. I even let the dog in the house so he won’t be barking and whinning at the door surely killing this arson-setting spark that we have set of which has the possibility of setting this place on fire.

“Ohhhh…Myyyyy!”

This feels like the old days. The Lets See What You Are Made Of kinds of days. They are those raw, needy, urgent, life affirming, first coming together moments of young ferocious sex. That kind that shakes you down to your core and tears open you heart with the kind of lust that has enough energy to change to course of rivers and perhaps even part the Red Sea.

I would like to say we made it to the comfort of our bed but I can’t. The bathroom provided multiple view points and B is harder than the granite countertop that I laying across. My legs grip B like a cowgirl riding bareback, calves against his muscular flank. I must say I was tempted to make a dramatic sweep to clear the counter but I will confess that the thought of what it would cost to replace my Dolce & Gabbana Light Blue (my ONLY expensive I WANT TO FUCK YOUR LIGHTS OUT scent)  and my favorite #242 lipstick made me hold back instead of sail. I was filled with him… all of him. My head.. with sexy “take me now” thoughts of him. My nose… with the musky scent of his body. My eyes… taking in the delightful naked sight of him taking in me, and well, those other parts too. It was hot but with a children-are-in-the-house type of seductive quiet. It was oh-so-sexy and desperately needed.

Everything was perfect…until the dog started howling. Loud, long, and off-key. A fingernails on the blackboard sound.

“Andre,” I manage to pant/yell from the bathroom. “Please go let the dog in.”

I hear the door slide open and the howling stops. But we continue on for as long as age, children in the house, and howling dogs let you. And I am reminded once again…this is why I married this man!

Later, in the evening Andre looks at me with a blush on his cheeks and a grin on his face. He is one of the smartest people I know and the autism just adds to it because he recognizes things and tunes into things that most of us don’t.

“Mom, did you and Dad have a good time this afternoon?”

“What do you mean?”

“You know this afternoon when the dog was howling.”

“I’m sorry I don’t understand”

“Haven’t you figured out yet that every time you and Dad have sex the dog howls?” he replies with a laugh. ” I’ve noticed he’s been howling quite a bit lately.”

Now it is my turn to blush.

Damn dog!

 

 

 

 

Fences- A Positive Post

/ Gardy Loo Pismire / 4 Comments

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Yesterday Paul needed to get some service hours in for Scouts. He elected to paint the fence at our church. It was hot and the fence sat square in the path of the intense rays of the scorching sun. Six hours spent working in the sun is difficult for anyone but even more so for a young autistic teenage boy with no previous painting experience. Fortunately, one of the older members of our congregation (R) was there to provide guidance and cheer him on.

I love it when old and young connect. There is something almost magical that happens when wisdom meets youth. Learning occurs in an unstructured setting and life’s lessons are conveyed easily. More importantly, both parties share those things that are important to them and greater understanding of the world and each other is obtained by both.

When he arrived home Paul was stoked and could hardly wait to tell me about his afternoon. But it wasn’t the fence he talked about. It was the connection that he made that mattered the most to him.

“Did you know that R served in the Korean War?” my sweet Korean boy asked.

“I had no idea,” I replied.

And so Paul sat with me and excitedly told me all that R had shared with him. Things about the war, what the country of Paul’s birth looked like back then, and how his life had changed because of his service. They also talked about what boys did growing up in the 40’s, how times have become more complicated and R’s ideas about the important things in life. But most of all Paul gained a friend. A man who could teach and discuss without being parental. A person with whom Paul could relate his troubles regarding peers in school and his concerns for the world as he navigates becoming a young adult.

It’s funny how sometimes in doing things for others you gain something special and totally unexpected for yourself.  This weekend Paul learned from R the value of a friendship with someone older and wiser than himself. He learned to share problems and issues and listen to good advice in return. And more than just learning about how to paint fences he was also taught how to mend a few too.

 

 

 

 

Think Of Them

/ Gardy Loo Pismire / Leave a comment

 

Sometimes I am just so disappointed in both B and myself on behalf of our children. Ideally, no child should be a child of divorce but our kids have even more compelling reasons than most not to have to their parents split up.

Our youngest three children are all adopted. Obviously adoption involves loss and children who have been adopted have already lost their first family. They already have certain holes in the hearts and as adoptive parents we do everything we can to try to patch them. But as hard as we try, for most adoptees, something is still missing. Some don’t examine these feelings or loss or abandonment until they are 20 30 or even 40 years old. Some, like my son Paul, live with this wound their entire lives. Always wondering who they are and who they come from. Always believing there was something “wrong” with them rather than something wrong with the situation they were born into. None of these kids deserve to have their family severed again. My heart aches for them should we divorce and the guilt is tremendous. I mean, we willingly and lovingly brought them into our “forever” family, as the adoption community refers to it. But we may not be forever to children who desperately need the stability of forever.

Both Andre and Paul have autism while Paul also has some mental health issues. In talking to their psychologist she says that divorce would devastate Paul and could take him to a place from which he cannot return. Who does that to a child? Who knowingly divorces knowing that this is a possibility? I don’t even know how to wrap my head around this and I don’t understand how B could either.

And Gracie is at the age where losing her family could impact her ability to sustain her own relationships. According to studies older children remain profoundly effected by vivid memories of suffering due to their parents divorce. They are concerned about the unreliability of relationships and fear of betrayal when they are older and divorce happens.

I know that there are good reasons for divorce and I know that not all kids suffer because of them. But I also know in a family like mine that divorce will be most likely be catastrophic because of the special issues that are involved. It seems so ridiculous and selfish to be talking divorce just because a marriage isn’t “perfect.” Nothing is perfect in this world and I hope our children don’t internalize it as this divorce is occurring because they are not perfect either. Although we would sit down with them and try to convey that it has nothing to do with them, I suspect that they will not buy into any easy platitudes.

So I sit here and hope with a heavy heart that things improve for us and for the sake of our children. For if we divorce they have the most to lose. They are the innocents.

 

So Paul’s Therapist Says…

/ Gardy Loo Pismire / 4 Comments

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So Paul’s therapist said to me yesterday, “I know you are not going to like this much, less want to do it, but you will have to do this so it gets through to Paul. If he attacks any member of the family you must (without telling him) call the police and have them take him to the hospital on a 5150. He is getting too big and he needs a reality check that if he hurts someone there are dire consequences. If you do not do this now at this age while he still has a chance as he ages he will be incorporating this behavior more and more into his life. You have got to try and stop it now.”

Hearing those words cut me. Deeply. Call the police on your own child. You must. You have to. It is your obligation. Failure to protect your other children charges could be brought against you if you don’t. He has to learn.

And so I “get” the logic I must ask … if he was rational I would agree. BUT if someone  is undergoing and episode of psychosis/mental illness how can they just stop themselves? Is it as easy as all that? I think not.

One of the things that scares me is that police will come to our door. What if Paul were to run, resist being taken or because he cannot stand being touched in certain ways..hits an officer? We all know what happens to minorities in these times of situations. Often they are seriously injured or they die. How do you risk this happening because a 14-year-old is in a rage?

Yes, I know it is what must be done but what unintended consequences might result? Could I live with these if something horrific happened because I picked up the phone? Could I live with these if something horrific happened because I didn’t pick up the phone?

How do you wrap your head around all of this without it destroying your soul? Without it destroying…you, relationships, your child and your heart?

Nothing makes this possibility better. Nothing. All it looks like is a long scary road which I do not want to take but will in order to try and save my son.

 

 

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.

Being Mind F***** By Your Kid

/ Gardy Loo Pismire / 2 Comments

 

This happened about five years ago but it still amazes me that I am no closer to solving the problem of not getting mind F***** by my son with autism.

So today I was called to school because Andre was acting up and out. He kept calling out for his stuffed dog, Snuggles. OVER AND OVER AND OVER again. Even kicked his aide which has never happened before…lovely!

So I went to school armed with cleaning products (natural of course) and a trash bag for picking up leaves to add to my compost pit as a punishment. Seems this all started because:

A) I caught Andre trying to take his dinosaur book to school and removed it from his backpack

B) seems I forgot to give him his medicine.

Score two points for the Loser Mom of the Year award. So Andre is cleaning the tables in the cafeteria and it turns out he is having a great old time and would much rather be doing that than to be in class. Project Clean The School backfired on me. Hmmmmmm, my brain is on fire as I try to think about how to stay one step ahead of him.

Today when he gets home, he is still out of sorts and totally misbehaving. Finally, I told him that since he could only talk about Snuggles that I would be taking said stuffed dog and keeping him with me and that if he did a good job at school tomorrow he could have him back; which I might add he went with quite readily which surprised me.

About an hour later his ABA tutor, Amy, is asking him to write down three things he could have done differently at school regarding the SNUGGLES EPISODE. He tells her “Who is Snuggles?” and just starts screwing with her.

“I don’t know a Snuggles?”

“Who is Snuggles again?”

“I don’t know any Snuggles, do you?”

I mistakenly decide to call  his bluff and up the ante. So the next time he says he doesn’t know who Snuggles is I say, “Well, since you don’t know him I guess it won’t matter to you if I take him out to the fire pit and burn him up” to which Andre replies “I”ll get the marshmallows!!!!!!!!!!!!” Amy and I look at him dumbfounded. What this is his best friend since he was three years-old and he wants to roast him right along with the somores? I just don’t get it!

So I try again impressing upon the fact that Snuggles is going to be a heap of ashes when he is done in the fire pit and Andre’s response is still, “Bring on the marshmallows!”.

Now I am caught between a rock and a hard place and I have put my own self there!!!!!!!!! UGHHHHHHHHHHH! How can I do this to myself????? When will I ever learn????????????

For now I have no choice but to march Snuggles out to a fiery demise. So up the stairs I climb like a soldier leading a prisoner to the guillotine. And as I hold the doomed dog in my hands looking at Amy with a ‘please help me get out of this mess’ kind of look; down the stairs comes Paul with tears in his eyes.

“You can’t burn Snuggles up, you just can’t” and the floodgates let loose. “Andre loves Snuggles and Snuggles has been a loyal friend.”…AND… I’LL TAKE THAT…saved by an eight year old.

“You are right Paul and since Andre doesn’t care about Snuggles anymore and you have spared his life he is now yours.” (Thank you Paul. Bless your kind compassionate soul 1000 times over)

 

To which Andre says “Shucks no marshmallows!”

This means, of course, that I will not sleep all night as I try to figure this whole situation  out because it is now painfully obvious I am being mind f***** by a nine year old and I don’t know what to do about it.

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!