We have worked hard for this moment. All of us. When your child has autism the old adage is really true…it does takes a village.
Our family has spent years going to therapists, doing nightly neuro-therapy, hippo therapy, social skills classes, ABA therapy, special autism programs and attending IEP’s galore.
And then one day it happens…it all pays off.
Today, Andre received his first acceptance letter into college. Frankly, it feels like a miracle. All the sacrifice. All the sleepless nights. All the arguments about taking pride in what you do. All the school calls about his behaviors and going there, not to bring him home, but to force him to clean up the school yard if he wouldn’t cooperate and listen to the teacher. No rewarding bad behavior here!
Admittedly, there were days we weren’t sure if we would make it….all of us…parents, kid, and teachers. For Andre, an uncovered classroom window meant watching the birds instead of listening to instructions. His life consisted of figit boxes, weighted vests, and mechanical pencils of a particular type or he could not concentrate in order to do his work. Autism combined with ADD makes sitting still incredibly hard, listening very difficult, and organizing darn near impossible. His narrow list of interests and the thought he shouldn’t have to learn what he didn’t deem important made his teachers want to pull their hair out. But still he persevered and so did they.
Four years ago he received Boy Scouts highest award…The Medal of Honor…for saving an elderly ladies life. Last year he became an Eagle Scout and immediately stopped going. Most of the time he stays in his room drawing characters for the novels he has been writing for the past several years. And not because I am his mom, but because it is the truth, his books are really good.
I don’t know if Andre will go off to school come fall. He might delay leaving home for another year so that he can finish his Associates Degree that he started working on in high school and allow himself the time to mature another year. Sometimes I think he might be ready. Lots of time…not…especially when I realized he has not showered for a week, brushed his teeth for days, changed his underwear since he last showered or remembered to take his medicines since I last reminded him. Frankly, he is several years behind his peers maturity-wise so he has some catching up to do but then again sometimes the birds that soar are the ones that are kicked out of the nest missing a few feathers.
As I look back over the years the times of despair were many. The worry was great. The uncertainty was sometimes crippling. Sleep was lacking. But Autism didn’t defeat us then and it won’t in the future. The village has got this but more and more it’s up to Andre now. And you know what…he can do it. For autism no longer defines Andre… he defines it. With a little help and understanding my son will reach his full potential. It may be a life that is different from what I envision or what I would want for myself but it will have meaning for him, purpose and joy. And that is what really matters anyway.
Autism sucks. At times it contributes to immense suffering for both the person with autism and his/her family. Sometimes it just does. Period. End of story.
Frankly, I have it easy if you consider the many behaviors that encompass the entire spectrum of people with autism. There are those people who cannot speak. or toilet themselves or self-harm. My sons have none of these issues. We are fortunate.
But sometimes I get weary of the constant pushback.The whole I say “yes”, so he says “no”. The fifty pokes to my arm everyday. The constant giving of some of the deepest parts of myself and getting very little back in return. The feeling that I am doing too much, or not enough, and either way believing whatever it is I am doing; I am most definitely not getting it right. Sometimes it is downright discouraging feeling that your choices are limited, as is your pocketbook, in your ability to get your children the help that they need. And for those of us facing mental health issues along with autism the chances to obtain needed services decrease even more until the quagmire you are in looks a lot like quicksand and it feels that way too.
Yes, I know that my boys are teenagers and some of this is normal teenage behavior but often it feels like it is teenage behavior on steroids and the doses are getting larger by the minute.
Over the years, I have heard comments such as “This too will pass.” Will it? When? Or “You are building character.” Seriously? We have enough character in this house to write our own sitcom. We don’t need anymore. So now, after all those years of worrying about offending others; I no longer put up with those people who “give you the look” or make”kindly” suggestions on how you could improve your children’s behavior. To them I suggest: you are not fighting the daily battle so you have no say. Keep your thoughts to yourself. I don’t need them and neither does anyone else who is doing their best day in and day out.
Maybe someday things will get easier for our kids. There will be less bullying. There will be more services. Schools will do what is right and give kids what they need to reach their full potential instead of fighting parents every step of the way. But until that time, parents are here engaged in a daily battle for their kids rights and it is sometimes beyond exhausting.
So the next time you see a special needs family don’t judge. Just give them a smile or a kid word and know they are dealing with more than you will ever have to. Then go about your business thankful that your family is doing well.
Believe it or not sometimes I am beginning to see light shining on the path I have been forced down due to my husband’s infidelity. I am beginning to see a little clearer how I contributed to this debacle. NO, it does not mean that he was just in doing what he did. It just means that sometimes we unwittingly do things that help shift the tide of events to a road that was never meant to be traveled. For it is often NEVER just one persons fault when a relationship unravels. Let me explain.
Before B’s affair came to light I had not been enjoying my life for quite a long time. Sometimes autism took its toll. Sometimes my own negative thinking. Sometimes it was just situations involving me in things I shouldn’t have let myself get involved in in the first place. Other times is was a very low level depression and large amounts of stress that contributed to my thinking that life had somehow become a struggle. And while I recognized that life was never meant to be a struggle somehow it was turning into that very thing it was not meant to be. Often I felt I had lost control of my own life.
Recently, I have come to see that this pain of my husband’s betrayal has brought good things to my life. When I came close to divorcing I was distraught and depressed. If I thought life had been a struggle before, now it felt like a 1000 pound weight had been added to the backpack that I carry on my life’s journey. All my self doubts rose like a tsunami and smashed my ego into smithereens like wooden boats thrown against giant breaker walls. I was a mess.
Yet, slowly I have come to see many positives that have come my way after this experience, one of which I would like to share with you. You see, in almost losing myself and my life as I knew it all of a sudden I realized what a good life I had. For the most part I have loved it and when taken as a whole it had made me happy and has brought me much more joy than sorrow. I had just forgotten the good parts and was concentrating on the bad. Trying to fix things that were not mine to fix or living for the future and not in the present which created suffering and unhappiness; discontent and anger.
And so, in almost losing everything, I have gained a new and positive perspective on my life…and when I got that back I realized that my remaining years are meant to savored, grabbed, and spent looking for the first buds on a tree. So now I stop and listen and look, recognizing and appreciating the pure joy I hear in the laughter around me, all the while enjoying brilliant sunsets that are best viewed when still and contemplative. For life was never meant to be a struggle and I am trying not to make it so.
“Fool me once, shame on you.
Fool me twice, shame on me.”
Shame on me. Shame, shame, shame.
We are just about ready to close on our new house. We are packing boxes for the move. B is acting like the man I used to know…loving, taking my hand, looking into my eyes, telling me he loves me numerous times a day. I feel like a school girl again. Life is good. Until Tuesday.
At 7 am B walks downstairs and tells me he has not been feeling good since Friday. He needs to go to the doctor. Oh, and he feels guilty that I went for HIV test after finding out about his three year affair with our tour guide in Vietnam and he will get tested just in case. Oh and he has something on his dick.
He returns home.
“So did the doctor look at your dick?”
“NO, I didn’t show it to him, He just ordered panels.”
“Okay, that makes no sense. Why would you go and worry you have something but not show it to him?”
Let me look. I see nothing. My antenna are now a mile high in the sky. Well, actually they were when he told me he was going to the doctor in the weird way he did so. That is just not like him.
On Wednesday morning he has had night sweats for three days and is up at 2 am. He is frantic. He tells me he is feeling really ill and has been sick for days and lost 6 pounds yesterday. He needs to go to the ER now. The man is out of his mind kind of frantic. Crazy nuts kind of frantic. Weird. As he is about to leave he grabs my hand and says:
“I think I caught something. While you took our son to a specialist on Friday (he fractured a bone Thursday) I went to a massage parlor and had unprotected sex. I swear I have never done anything like that before. That is why I have been avoiding you sexually. I think I caught something and don’t want to give it to you.” (He is still waiting for those Brownie points!)
“Wow,” I say. “If you wanted a divorce all you had to do was ask.”
And off he goes.
That morning I hired an attorney. I am filing for divorce. I also asked the court to step in and oversee a large sum of money that is coming our way the last day of the month. I have to protect our family and make sure that he won’t get the money and skip town to Vietnam with all of it, leaving me unable to care for our kids. Do I think he would do that? NO. Am I sure? NO. I don’t know anything anymore. I can’t believe anything anymore. I have been living an illusion for these past many years. I also wonder if he is suffering from mental illness that runs in his family.
He, of course, is down on one knee begging for forgiveness. Trying to get me to move with him while he “works on himself.” He is currently at a Catholic church praying for God to help him. He keeps sending me articles like “Five Reasons Christians Fail to Overcome Lust.” (Maybe the problem is you are not a Christian or you are trying to act like something you are not?)
Meanwhile, I flew to New York yesterday to clear my head and be with my son. I am trying to practice compassion for myself, love myself and just be kind to myself. I have had three years of chaos and I just want the freedom to grieve, take it easy and let someone take care of me for a change.
Our children who live at home are unaware of what is going on at this point. I am:
and wondering how I will ever be able to trust again.
I am trying not to be angry or bitter as It will only hurt me in the end. BUT…
my dreams have been thrown down the rabbit hole again but this time there is no soft landing. I am bruised and broken but somehow I will survive.
I started my diet to lose 20 pounds at 6:00 a.m. It is now 11:30 A.M. and I have downed two pieces of fudge, drank another cup of coffee that is mostly milk and devoured a bag of moon cheese. All within 30 minutes.
I had good intentions. Truly I did. And I was sincere too in the belief that this week would be the one I got off my kester and set to work reducing my waist but at this point my resolution appears to be a waste… for life got in the way.
It all started yesterday. I drove home from Las Vegas after Gracie’s dive meet where she took a first in one event. So proud of that kid. Anyway, after driving 6 hours I was met at home by an angry teenager. Paul was fine while we were gone but seems he and Gracie got into it the moment she came through the door. An hour later I was holding him while he melted down and cried. Damn you autism and mental health challenges!!!!
After those difficult and emotional moments it appeared things were better until I decided to spoil myself with a nice warm bubble bath. And therein lies my first mistake…actually thinking that I could do something nice for myself without being interrupted. For as I lay in the tub I suddenly heard very loud shouting and a slamming of a door that shook the entire house. As I jumped up and wrapped a robe around me I heard uncontrollable crying coming from Paul’s room. I walked into a mess caused by a kid who had dumped, in a rage, the contents of his desk all over the room and he was sobbing. I went over to him and he yelled at me to leave him alone. Now I don’t know about you but when I hear those words spoken with the tunderous roar of a fighter jet I know that I am needed more than ever. I also know I need to change into my Green Beret mentaility to succeed in turning things around despite the odds being against me.
What ensued was not easy. I ended up on the floor while this child both raged, hyperventiled and talked scary stuff. I held onto him like his life and mine depended on it. This went on for almost an hour until at last he wore himself out. His words broke my heart. His pain broke my soul. And his anger touched a place in my brain that I never want to visit again.
Later, after going down to the kitchen I realized what the problem was. While I was gone he had not taken his medicine and B had not checked his box to make sure that he had. Two days without meds in Paul’s case is a disaster. He becomes a tsunami of emotions that threatens to wipe out anyone nearby and the result is anger that cannot be contained.
I worry about my son. I worry that one day he will rage at the wrong person. I worry that while “out of his head” he might get shot by police or hurt himself. I worry that in his anger he may seriously hurt his siblings instead of a kicking a hole in the door that is a reminder of when he got seriously mad. Sometimes I worry that his mental issues will engulf us all and carry us down the mountainside with him broken and buried under tons of stone. I know my marriage has been effected by Paul’s issues and that we all suffer in different ways when he is off-balance and out of control.
This morning, I packed everyone’s lunches and drove each one to their school. I proceeded to the gym in order to kick my diet into high gear. As I was nearing my goal of three miles I received a phone call. Paul was having an anxiety attack at school and could I please come and get him?
He’s sleeping now. His face soft and relaxed. Quiet breaths making his chest rise and fall in a slow steady rhythm unlike yesterday when he sobbed so hard he chest was moving mountains. I look again and my heart fills with love for my son; this boy who feels others emotions so intensely and takes them on as his own. This boy whose face I first saw on an adoption site. Right now, he looks like an angel which is what I am afraid that he might someday be. For unless, we can find a way to teach him to control his emotions I am afraid he will be hurt and possibly killed. By a stranger, The Police. Or himself. Either way, our path is a hard one and we are scraping our knees as we once again escape the sharp edges of the precipice which is our lives.
Several years ago, in preparation for an upcoming trip to Scotland, I started working ernestly on our family trees and found we are related to many Kings and Queens from France, England, the Netherlands, etc. Needless to say this has provoked many interesting conversations around our house.
Andre: Beets? Beets? You know I don’t like beets.
Me: You are going to have to try them. They will taste great.
Andre: I know what happened to the kings in our family
Andre: Their mothers fed them beets
Me: Eating beets has never killed anyone
Andre: Want to make a bet? I bet if you analyzed their stomach contents you would find beets.
Me: Why Do you think that?
Andre: Anything can be hidden in beets
(Not to be outdone) Paul: Yeah the color hides everything
Andre: I am sure they were poisoned with beets
Me: Doubtful. Who would want to poison them?
Andre: Their mothers
Me: WHATTTTTTTTT? Mothers would not poison their children.
Andre: Oh yes they would
Me: Come on, Andre. You are letting your imagination run away with you
Why would a mother do that?
Andre: Because they want the power.
Andre: Women didn’t have power and they wanted it. It’s been that way through history. Mothers always want to find a way to control their children. You can’t deny it can you?! And beets were the way to power.
Me: You will still be eating your beets.
Andre: Drats. I thought this little history lesson would change my history with beets.
Me: No way, dude.
BETTY DAVIS EYES
I’m depressed. There. I said it. I’m depressed.
Frankly, it worries me as I have never allowed myself to go there. With so many people depending on me and a sister who spent time in a mental hospital; I have never before let myself plumb the depths of the despair I am feeling. However, now I am trying to give myself permission. Permission to explore what is on the other side of two years of marriage chaos and confusion. Permission to grieve for dreams that have been pushed aside by reality and for children who struggle due to the challenges of autism. Permission to just feel what I need to feel, even if it hurts. And permission to feel those deep rooted emotions and to not intellectualize my feelings as all the intellectualizing I do just makes me hurt worse.
I will confess this intense feeling of sadness scares me to my core. Not because I am afraid to feel those lows but because when you have had a family member who has experienced hospitalization due to her mental health issues and you have spent years dealing with hers…well, I just don’t want to put my family into that vat of pain and helplessness you can’t help but feel when surrounded with all of that. Yet, my therapist said to me that I have the skill set to survive if not thrive while looking at those things that make me uncomfortable and sad. And after reading Thomas Moore’s The Dark Night Of The Soul I know that there is plenty to be gained by going there for a brief respite. But still, I hesitate, my feet in cement for fear of going in too far or deep. For fear of becoming like my sister. Of letting people down. Of not “performing” the requirements that are expected in this one act play that I am living.
I know I need to take a look at what is coming up from the depths of my soul. I know that I need to allow myself to feel these intense feelings. I suspect that it is similar to drilling for oil while trying to contain the amount that surfaces at one time. And its also acknowledging that what comes up will have to be refined in different ways depending on how it will be used. And I acknowledge that any spills that occur will give me new skills to better contain the overflow the next time.
If I had my way I would stay in bed for a week and pull the covers over my head. I would play every sad song I have ever heard and have a Bailey’s on the rocks sitting on my bed stand sipping it over several hours. Oh hell, maybe I would guzzle it instead. That is what I wanted to do today. BUT…I had to make breakfast and lunch for everyone, take them to school, take a kid to the doctor and another to get her allergy shots. I had to wait for the dryer repairman, do the dishes, and mop the floor. I had to pay bills, get the oil changed and attend a meeting. Tomorrow it is more of the same.
So, here I sit, one toe half in and half out of this deep sadness. This depression. Perhaps if I am brave enough I will step on in and let it take me where I need to go. To places I have never visited but probably should. Only afterwards will I understand that there are things to be gained from examining things below the surface. And who knows…I may just strike the motherlode while I am exploring with the sheets making the perfect tent in which to hide away from the world.
I remember the first time I saw Gracie. She was sitting on her foster mother’s lap, so tiny and delicate, that she looked like a doll. She was a preemie so everything about her seemed fragile and small. I fell in love with her right then and there as I stared at the tiny 3×4 inch photo in my computer screen; engraving her sweet face on my heart forever. Truly, it was love at first sight and I was bound and determined that she would become our daughter. I thank my lucky stars that my dream came true because everyday with Gracie has been a delightful dream with a mixture of happiness, joy, and a pinch of awe thrown in for good measure. She truly is amazing!
Today Gracie turns thirteen. It is hard to believe that I will never again be raising a mere child. Instead, I am guiding young adults towards the time when they leave the nest…hopefully for good.
Since Gracie is a now an official teenager, it means I have four teens living in my house. Maybe I should say co-existing, as war could erupt any minute when you are stepping through emotional teenage land mines which are scattered, undetected, here and there. Gracie assures me that she will not act like a teen but she is already rolling her eyes and using THAT tone of voice which indicates that somehow I have become the absolute dumbest person ever to live on this planet. Forget the 55+ years of experience, the college degrees and my affable personality…I am soon to be regulated to the status of something below pond scum.
While I am excited about someday becoming an empty nester (finger crossed) I do have to admit I miss those times when my children thought I could do no wrong, when they believed I was smarter than G*D, and when the little things I did brought them such pleasure. Those were simpler times though I didn’t recognize them as such. I often viewed them as chaotic with all the meltdowns that two children with autism could bring. But now… well, even the meltdowns don’t seem quite as bad as when I was in the midst of them and I can look back and be proud of how I handled some situations that would tax the patience of a saint. Not to say I handled them all well but I did GOOD ENOUGH and that is just fine with me at this point in the game.
Today is one of those momentous days. Time and perceptions will shift for both Gracie and I as the label of TEEN is applied like a gooey sticker to her soul. May we each grant the other grace and dignity in the coming years as she grows wiser and my brain cells shrink in number. May we create memories that sustain us and may we see the best in each other instead of the worst. For the teenage years are upon us…may we both survive them with patience and our sense of humor intact! And may Gracie happily survive the impact that autism has on a family and a sibling..she has done a remarkable job thus far.
Happy Birthday My Sweet, Talented, Gracious, Fun-Loving And Hard-Working Baby Girl! You are my Superhero!
We have built houses together
Planted a vineyard and gardens
Raised six kids together
We have survived your mother
The death of parents
And your brother
We have moved
Numerous times for your career
Starting over again and again
Just knowing each other
In a city of a million faces
Finding comfort and love in that
And we have stuck together
Through so much adversity
Pain and sorrow
We have traveled the world together
Had much happiness and joy
Done things as a couple
That brought us closer
We have struggled
Raising two boys with autism
Put their needs ahead of our own
Done everything possible to give them
The best chance for a good life
So why it is now
After all the hard years
After all the time we have sweated and pushed
And fought the school system
After life and death
Hardships and pain
You want to abandon
And all the good times
We dreamed about
For so very long?
We’ve slogged through
The Rough Times
Taken so many wrong turns
But you don’t want to share
In the best that is to come…
The walking along the beach
Kayaking the rivers
And taking art classes
Working to save the river
And the seals
Old age sex
And watching with a tender heart
When one of us takes our last breath
Being there for the other
As one passes to the other side
To the unknown
The other left grieving and lonely
We’ve been through the hard times
Why can’t we share the reward
Of all we worked for together?
When life is finally getting easier
Why should a future wife
Get all the benefits
Of our hard work?
I do not understand
I will never understand
And don’t expect me to…
Don’t ever expect me to!
Yesterday I had a private therapy session with our third and final marriage therapist. He was highly recommended by my therapist and she believes he can help because he does in depth therapy examining both partners pasts and seeing how they effect the dynamics of the relationship. He looks at attachment in childhood and how that influences attachment within the marriage. I think he is a good fit but I was exhausted after our session. I felt like I had run a marathon and got run over by a truck at the end. Working on psychological/relationship issues is hard work if you are honest with yourself and others.
Recently I have been reading the book Hold Me Tight by Dr. Sue Johnson. The book jacket says ” Forget about learning how to argue better, making grand romantic gestures, or experimenting with new sexual positions. Instead, get to the emotional underpinnings of your relationship be recognizing that you are emotionally attached to and dependent on your partner in much the same way that a child is on a parent for nurturing, soothing and protection.” It is an interesting book and I see B and my relationship on so many pages and it saddens me. But we both keep trying.