Special Needs Kids

The Eagle Is About To Soar

/ Gardy Loo Pismire / 1 Comment

imgres-4

Yesterday my boys, Andre and Paul, received their Life rank in Boy Scouts. It is an amazing feat especially when one factors in all their challenges. Next up: Eagle Scout the final and highest rank. They are already busy deciding what their project will be. It has to be something that benefits the community. They have to plan it, fundraise for it, and organize volunteers to help complete it.

I have to admit I have been a lousy Scout mom. With all the other things I have done in the past or am doing I have rarely attended meetings and only occasional events. It is B who has done on a million hikes and campouts, attended every meeting, flipped pancakes for fundraisers, helped them earn merit badges and has taken a week off of work to make sure that the boys attended Boy Scout Camp. Without B, there would be no Eagles in the making. He has been there for years helping the boys to learn new skills and helping Andre when he falters. I am so proud of all of them.

As I watched Andre yesterday, his autism in full gear for whatever reason, walking in circles and shaking his head; I know that I have the Boy Scouts to thank for all he has accomplished. For all that both boys have. And while I have not always agreed with the policies put forth by the organization, I know that my kids have mastered skills that will benefit them in the future and may well save a life one day. In fact, Andre did earn a rarely given award, the Honor Medal, for saving a life.

So as they enter the final frontier of Scouting I want to congratulate my boys and thank all the adults who have mentored them and pushed them through. All those volunteers who have made Scouting fun and exciting. Because it is a joint effort by all involved and everyone involved are responsible for the fact that our soon-to-be Eagles are about to soar.

 

 

Holes… Or When I Am Gone

/ Gardy Loo Pismire / 2 Comments

imgres-6

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.

 

 

 

The First Rose

/ Gardy Loo Pismire / 6 Comments

IMG_6548

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

imgres-2

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!

 

 

 

 

Blessings In Daily Life

/ Gardy Loo Pismire / 1 Comment

As I contemplate my life with or without B I have come to the realization that there are several things in my middle age that I am striving to recognize and hold onto in one form or another. These are the things that are important to me and I am learning to value them even more as I age. They are also what bring meaning and blessings to my life and I want to experience them with eyes wide open and appreciate the richness they add to my spirit.

The things I want to have/experience on a daily basis are: Peace, Acceptance, Connectedness, Joy and Love.

Peace-I want peace in my heart meaning a satisfied and content heart.  I want a peaceful life meaning tranquility rules the roost with harmony following close behind. Peace that is a quiet and calm state of mind no matter what chaos is swirling around you. This also means having to practice patience in order to achieve it along with Sitting In The Silence.

images-14

Acceptance- Acceptance is probably best said in this way:

God grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
And wisdom to know the difference.

It is also accepting my children’s autism and loving them for who they are. Accepting myself in a deeper and more true way. It is being accepted for who I am in my relationship with my spouse sexually, mentally and spiritually. It is just accepting the day for what it brings me and not always trying to change things about it.

 

Connectedness- that feeling that the bonds you have with others are real, meaningful and as valuable to you as they are to them.  It’s a feeling of coming together and being absorbed in all that we share and all we are doing. Its being vitally and mindfully in touch intellectually, in spirit, and in presence.  Its a form of oneness.

imgres-5

Joy- I want to find joy in the journey…all of it. I want those fleeting moments of joy like the birth and a child to become more common place and easier to experience…like smelling a rose, watching your kids play soccer, and watching the moon rise on a hot summers day. Joy a feeling of great pleasure and happiness, and even more important, it is allowing ourselves to recognize and appreciate how good things really are on a daily basis.

Love- Probably the hardest to define but I certainly know that it encompasses and transforms joy, acceptance, connectedness and peace into something knowable and something better than when they are on their own. Its adoring, cherishing, infatuation, devotedness, and attachment too. Love is a many splendid thing…and much, much,more.

 

images-20

These are the blessings of life and if we allow ourselves to recognize them we will see them at work each and every day. I am greedy for more.

 

 

Fences- A Positive Post

/ Gardy Loo Pismire / 4 Comments

images-4

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.

 

Have We?

/ Gardy Loo Pismire / 3 Comments

images-1

Have we fixed what ails us?

Are we walking the path together

In a straight line

Or are we only connected together

By a line of oxygen tubing

That keeps us artifically alive

When in fact our relationship

Is terminal

Have we fixed what ails us?

Will we ever again feel

That closeness

That is beyond mere words

With an ability to finish

Each others sentences and thoughts

So connected that

Random young couples see us

And say

“I want to be like them”

Their (our) love still shining bright

Like a beacon of hope

To all the lovers and dreamers

Who have their hearts set

On having it all…forever

I used to think we had it all

Even with all the chaos that

Is our life with kids who have

Major disabilities that add

An extra layer to the complexity

Of our middle-aged lives

Now I am finding it hard to trust

Anything we have

Because I am afraid

And unwilling to settle

For something less than 100% honesty

But the truth floats through the air

Like a ghost

Leaving a trail of breadcrumbs

That leave me feeling

Hungry and unsatisfied

With what I have consumed

Where once I never questioned

My own happiness

Now I wonder if it attainable

With you in my life

Because I no longer know who you are

What you are and what you want

To Me, to my heart and to my soul

Whereas I was once willing to let things slide by

My happiness included

Happiness is now important to me

I am important to me

And I want to know

All things real

And not have to guess at meanings

Anymore

Where does that leave us?

You started this process

Maybe I will be the one to finish it

Or maybe I will begin to trust again

Right now the future is unknown

But isn’t it always?

 

 

Chiggers

/ Gardy Loo Pismire / 2 Comments

 

My therapist tells me that I need to “just sit with it.”

Don’t make any decisions and don’t go planning out your entire life

In a moment of fear or concern

Just sit with it…listen to it

But how does one do that with this sort of news?

Because as I sit in the silence

Trying to meditate myself out of the place I am in

I hear the incessant buzzing of an annoying insect

Trying to tell me something

That I don’t want to hear

imgres-2

Just sit with it…feel it

But instead I feel the sharp bites of chiggers

Trying to get my attention

Biting around my ankles

So I will get up and move

From this place that is suppose to be a refuge

Away from what is suppose to be a peaceful spot in my mind

While agreeing with myself that sitting with “it”

Is much too hard

I know I over think… over analyze

I have enough 20-year freeze dried food

In my pantry I feed us for a year

In case of a holocaust

I am prepared for every disaster, every emergency

Except this….not this

B says, “I don’t want to think about the future

I just want to live in today”

Smart man

I wish I were that way

Able to block out what I do not want to deal with

Or compartmentalize things in lockers so deep

You die with them stuffed deep inside

Locks rusty and worn but secure

Taking them with you

To God knows where

Maybe that is hell

Having to look at those items over and over again

The things you refused to see

When you were alive

The things you could change  but chose not to

Or maybe hell is that place

Where you go over your plans a million times

Trying to change the outcome

But are unable so you remain in that

State of anxiety for eternity

Neither sounds appealing

So I will go and get the bug spray

In an attempt to remove these distractions

And sit with “it”

In the silence

Alone

 

 

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.