Autism Touches Every Aspect Of Your Life

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.

 

 

 

Betrayal III- Liar, Liar-Your Dick Has Created A Quagmire (And It’s Still On Fire)

So this week we have been:

Him: His therapist once, marriage therapy marathon 2 hour session

Her: Her therapist for three hours, marriage therapy marathon 2 hour session

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He was instructed by his therapist that he had to tell me the truth and answer any question I might have even if it is six months from now.  And this is what I have learned.

 

  1. She has a much better wardrobe than me. My daughter noticed this phenomena when she said, ” Hey mom, look at her pictures when you met her. Her clothes were awful but the longer she was in this affair with Dad she got nicer clothes, better haircuts and fashion forward glasses. Yes, the mistress has matchy, matchy shoes, dress and purses to accessorize to the max when she is walking the red carpet. I have NEVER had matching anything except boobs that have slid downhill as I have aged. Anytime I would buy a $15.99 TJMAX shirt B would say, “When did you get that?”  Anyway, seems he sent over $20,000 to her and her family in Vietnam. Of course, it was to provide baby vitamins for her sister’s child and for her to buy food for the children at the orphanages. It is just coincidental that her wardrobe could rival a rock stars because “she is not that type of woman. She never wanted anything from me.”

2. Yes, there were times that he was messaging her from our home and I would ask who he was talking with and he would accuse me of being paranoid and make me feel bad about the kind of “suspicious” person that I was.

3. He was the one who suggested that they meet in Singapore. When I asked why he was there for four days without doing business he said he needed some down time. I guess that means down flat on his back while he was ridden like a stallion. What I am most pissed off about is where is the THANK YOU card from her for teaching him how to please and pleasure a woman. All that work over the years, from minute man to rocket man, and I don’t even get kudos from the recipient of my vast sexual knowledge.

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4. He, as a rich middle-aged man white man, convinced her sister, a single impoverished very young woman in a third world country, to keep the baby she was going to abort. I suspect that one of the reasons she did not was that she was convinced he was going to marry her sister. Does he have any obligations to this child since he participated in a family decision to keep this baby boy? (and no it is not his)

5. This story is not unique in B’s family. His brother went looking for Russian brides spending all his money (and he had lots) on these women until he married one who would not sign a pre-nup and after their marriage would not move to the USA. B saw how his brother was soaked but “this is not the same. She is not that way.”

6. He looked into fiance visas.

7. Of course, he gave her up for me about two weeks ago after giving me a commitment ring on Christmas but continued to talk with her. BLAH!

8. With 10 minutes of knowing that I knew about them she put up pictures of her and B in Singapore along with a heart in which their hands are intertwined.

So as a wrap up. B has conducted this affair for almost three years while I was sending money to her (our tour guide in DaNang Vietnam) and books for her father. I ate lunch at her family’s home and met her parents and sister. He sent her thousands of dollars over the years and his sister was friends with his mistress on Facebook. She has at least four different Facebook pages with four different names. B told me he was going to Singapore on business, when in fact, it was slutty cum dumpster business. All of this while I was working hard in individual and marital counseling to improve our marriage while he was working on his relationship with her and making me feel like crap so that he could live with his guilt. Meanwhile, our children are falling apart, autism rearing its oh-so-destructive head and I have aged 10 years in two days. Oh, and the house we were selling…the guy backed out on the day he was suppose to sign.

And he LOVES (cough) me and wants to make it work.

 

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While we were working on our marriage he used to say “I am not sure I love you. I hope to get it back but it might take 6 months or a year or that love might not ever return. Are you willing to wait?”

To this I say…to be continued tomorrow.

 

 

 

 

Betrayal II-Liar, Liar Your Dicks On Fire

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So the saga of my thirty+ year marriage continues.

After being assured by my husband that he loves me and will do anything for his family I told him I needed to have completed access to his phone which he agreed to. I asked many questions including wether he had seen her or not. He assured me that he had not and that she would not have sex with him if he was with his wife…how noble of her!

Later my oldest daughter Nicole called me. She said, ” I am sending you a picture that you need to see. It is dad with her in Singapore. She put the picture up after you emailed her.” (In that email I told her she was a fool and told her that she was not the only one he was doing this with. Did she really think that she was the only one?)

B and I were taking a walk with me asking questions. I opened the photo and saw him with the Chickie. He spent four days in Singapore fucking her last January. I asked him again, “Did you see her in Singapore?”

“No”

“Really, so what is this?” I asked showing him the picture.

“I don’t know who that is”

“It is you with her in Singapore, you dick. Recognize it now?”

He went white.

“I didn’t tell you because I didn’t want to lose you or my family.”

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Soon another text from my daughter. Worse still…seems my husband’s sister Jo is Friends with Chickkie on Facebook. I saved her daughter’s life and that is the thanks that I get. WOW! To me, for whatever reason, that is the biggest betrayal of them all. You love her so much you are already having your sister welcome her to the family!

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More texts from my daughter. The woman has four Facebook pages all with different names. My daughter then sends her a message that says “If you keep in touch with my Dad I will send your naked picture all over the internet including on your tour company site.” (Honey, I don’t think you should do that!)

The very unfortunate thing about all this is our children found out. I was packing to leave and told my son “Dad has hurt me deeply and I need a few days to clear my head. This has nothing to do with your you, your brother or sister. Sometimes adults disappoint each other and just like you need time away from your brother I need a little time away from your father, not you.”

He turned away from me angry and wouldn’t let me touch him.

“Honey, this is not my fault. This is due to a hurt that your Dad has done.”

B jumped in. “It is all my fault. Don’t blame your mother. I did something that hurt her very much and she didn’t deserve it. I am hoping she can forgive me (yeah thanks for putting that part in…making it my fault if I don’t forgive him…that is slick!)

Remember the telephone at the beginning of all of this…this is where it gets ugly.

Before I left I went and asked to see B’s phone. He said no.

“You promised,” I replied.

He handed it over nervously. I went to messenger and saw Chickie’s sister’s Face Time at the very top so I pressed the button. He went ballistic and tried to grab the phone. I tried to keep it away from  him. He grabbed me by the arm that just got out of the sling. One thing led to another and because he was hurting me…I bit him. Over thirty years of marriage and we have never had a physical altercation in our entire lives…until now. At this point our kids walked in the front door and her us yelling about HER (they have never heard us yelling like that at each other EVER). I got the phone and went into the bathroom. My hands were shaking so hard, well, that darn IPhone jumped out of my hand and into the toilet. Now neither of us could talk to her.

“I guess if she doesn’t matter to you like you have said, you wouldn’t have cared if I called her but obviously she means more to you than I do. Tell you what your fears have all come true. Everyone knows and you have imploded our family. Now go to her. You are free.”

My son went outside and lost it and started hyperventilating and saying he couldn’t feel his legs and it went down from there into a full collapse. I spent time trying to calm him…it was the worst thing I have ever felt in my heart, ever.  Gracie wouldn’t come out from under her covers. We have a totally traumatized family.

I am sleeping at a friends house. My life is a shambles. My kids are traumatized. My husband is without a job.

Life is good…and then it is not.

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Stress Eating/Mental Health Nightmares

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.

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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!!!!

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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.

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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.

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“FOR YOUR OWN GOOD” List

I don’t know about you, but there seems to be an exclusive list that it handed to each woman during the heat of labor which is promptly and conveniently ignored until the first child heads off to school. It is then, during Kindergarten Round Up, that you realize that every parent in the building decides what kind of person you are after watching your child interact for exactly 4.2 seconds and he is doomed to be a social pariah for the rest of his educational career. It is then, at that exact minute of total mom failure, that THE LIST suddenly re-emerges only to hang over our heads for eternity, flapping in that empty space that our brains used to occupy.
Every mother knows about THE LIST. It consists of all the things our kids must do at least once so that we can check the box that verifies to the world that we ARE A GOOD MOM.
Trying new food. The latest…brocollini….images-1
Yearly pictures at Sears…oops missed that one…but now that I am aware of that fact so by next Tuesday it will be done…semi-check.
Playing the piano and while he may not ready for Carnegie Hall, he does know where middle C is located…images-1
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, trying to knock out athletic activities…well… it’s a challenge. If I had my druthers I would just scratch that whole section off THE LIST because several family members consider high quality endurance sports akin to laying on the couch and dipping ruffled potato chips into a savory 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 to admit that I do 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. That feel-good, doing-the-right-thing, going for Mother Of The Year, attempt is what lead us to the Broken Leg Ice Skating Rink yesterday afternoon where the kids tried ice skating for the very first time.
 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 thanks to Andre’s unrelenting complaints about the lack of high-quality plastic engineering.
Next comes the vending machines. Anything that has hidden ingredients that make one of my kids break out in hives is considered an immediate success and suddenly every one wants a buck to insert into the machine as they rapidly make their way towards anaphylactic shock.
Finally, throw in a 16-year-old cashier who is making minimum wage but will answer every one of the 20,000 questions thrown at them about the history of said sport…the equipment used and the rules of the sport, then participation is a definite maybe because all bets are on that they can continue with the questions until the place closes for the evening. Better yet, if the cashier can quote numerous safety statistics; then its a go-home because no sport is even safe enough for my boys. Yes, even contemplating sports can be an exhausting endeavor.
So after spending one half- hour tying and re-tying the skates, using the bathroom…for the third time… 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 like the pungent odor that follows us around for three hours after eating grandma’s chili. We just couldn’t shake it. As we left the bench, feet started going every which way but forward and the sound of our bottoms 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. AGAIN.
Yet, we persisted. Paul put his game face on and after one trip around the rink fell and got a bloody nose that spurted ten feet.  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 ten minutes making it half-way 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 of the ice. His face actually beamed so brightly he was in danger of melting the ice.
Later, after exiting the rink, Andre 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 despite being bribed with hot chocolate by B.
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?”
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“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. But still you try. Again and again. Pushing me to be a better kid so you can feel better about yourself as a mom. So really, if you think about it, this list is really about you and your feelings of inadequacy. Frankly, I think a therapist for you would cost a whole lot less than this “contrived family time.” I think that is something you need to seriously contemplate before one of us dies during these little mini-olympics of yours.”

And with that he was done.
But I’m not.
I want to know… how he knew about… THE LIST?
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Eat Chocolate Cake

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The school called today

Andre didn’t turn in his homework

He said he burned his book

I don’t think so but…

I eat chocolate cake while I contemplate the situation.

The other school called about Paul

The teacher tells me there is a group issue

Paul is missing assignments

I will check and let you know….but first

I eat chocolate cake before digging around in his room

I go to the school to discuss the situation

I let all involved know

That Andre will be staying after school in the tutoring room

Everyday until all the assignments are done

He clings and claws at me

He baby talks and pouts

I escape and walk around campus

And eat that emergency piece…

Of chocolate cake

That I tucked in my purse

Really this is getting too much to manage

Maybe I should turn to booze

And give up the chocolate cake

We get home

Paul is upset because I insist that he does his chore

That he did not do before he went to school

Man, that chocolate cake looks good…tastes better than it looks

Two boys with autism

One deep dark chocolate cake

Almost gone…

Autism makes you fat!

Best Qualities As A Mother

UPDATE

Since B stated 18 months ago that he might want to divorce we have done a lot to try to save our relationship. This includes a Marriage Encounter weekend, his therapist, my therapist and a joint marriage therapist. I have decreased my yelling to a trickle, have kept the house in good shape and have lost weight. Frankly, things had been improving for close to a year but lately I have noticed that we have been regressing. More grudges, less sex, 66% less dialoging, etc. I am a very intuitive person and I “feel” these changes and recognize them for what they are and lately I have been feeling really anxious about them.

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I have never been an anxious person even when I have had plenty to be anxious about. For 57 years I have kept most of that anxiety stuff swept under the rug. But lately, it has occurred to me that as B distances himself my anxiety rises. It is an uncomfortable place to be. Sometimes it even makes me question my sanity because I tell him I am feeling the distance which he denies but then three weeks later at a therapy session he uses the words and admits that when x happened he distanced himself all the while denying my concerns for the past weeks.  It is a crazy way to live.

BEST QUALITIES

Recently, we had a dialogue question that asked each of us to talk about our partners best qualities as a parent. In the allotted 10 minutes I wrote about 7 qualities that B has that I think make him a great parent.

Now I know in dialogue you are not supposed to judge the other’s response because they are based on “feelings.” And feelings may be factually true or not but the bottom line is that they are what they are. So when B wrote about the qualities he admired that I had as a parent it basically came down to the fact that “I cared for my children.” To say I was hurt that this was the only quality he listed was an understatement.

Everyone cares for their children. You care for your dog. You care whether you have enough toilet paper in the house to last the entire week. Caring for your children really doesn’t get any accolades in my book. It is something we all do… even badgers, skunks and probably even one-cell amoebas.

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So I took this to my therapist. She wanted me to write down what I wished he had said about my good qualities as a parent. Here goes:

  1. I wish he had said that I am good about seeing or initiating those deep soulful and meaningful talks when they need them to boost their confidence, understanding of life or just need to express their concerns. I wish he had said he knew that most of the time they seek me out which shows that they trust my love and advice.
  2. I wish he had said that I love my kids fiercely and deeply and that they know that they can count on that love and can trust me to be there for them forever.
  3. I wish he had said that my children know I believe in them and that I think that they can accomplish whatever it is that they set out to do and that by knowing this it will take them far in life.
  4. I wish he had said that he knows I am their biggest fans and that I cheer them on with encouragement when they are lacking the spunk to make that “final touchdown” in whatever it is they are doing.
  5. I wish he had said I am a “good” parent far more often than a “bad” one and that even when I fail it is not intentional or malicious.
  6. I wish he had said that raising six kids, two of whom have autism, would be a tough job for anyone and that it is amazing I don’t lose it every day.
  7. I wish he had said that my kids had experienced so much of this world thanks to me and that if it was left to him they would not have.
  8. I wish he had said that I try my best to teach them the important things that they will need to navigate their lives now and in the future.
  9. I wish he had said that I am “good enough” parent some of the time (which is okay) and a great parent when it really counts.
  10. I give good hugs.
  11. I wish he had said that I encourage my kids to take risks which creates opportunities for them to believe in themselves.
  12. I wish he had said I am an honest parent in dealing with my kids and all the people we have to deal with because of their interests and their issues and that my honesty helps provide desperately needed clarity.
  13. I just wish he had said I am a good mother and he could not manage without me.

And while this exercise was difficult because I kept wanting to explain or add in the negative to balance it all out, I didn’t because this is my gift to myself and a tribute to who I am as a parent. I don’t NEED B to validate it…but it would have been nice.

On Giving Love When You Have None Left To Give

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Sometimes my house is pure 100% chaos. Sometimes it is as quiet as a lamb. Most of the time it is somewhere in between. But then there THOSE TIMES; the times when Andre digs in and NOTHING I can do will change the trajectory that we are about to embark on.

Change for Andre is difficult. It often is for those on the autistic spectrum. Sometimes that change is as small as using grape jelly as opposed to strawberry on Andre’s PB&J. But more often it is something along the lines of telling him to do his chore.

“Andre you need to empty the dishwasher!” (for the third time)

“I dun’t want to”

“There are lots of things I don’t want to do either but they must be done so empty the dishwasher. NOW”

“I dun’t want to”

This I dun’t want to would go on 100 times if I permitted it. Usually at this point the conversation will escalate to one more warning. Then I head upstairs (with him trying to stop me…pulling on me or poking at me) and take all of his electronics and tell him that he can have them back when his chore is done.  This is followed by ten minutes of attempted manipulation, threats (I’ll put your phone in the sink if you don’t give me back  my stuff) and flat out increased defiance. Finally, Andre will realize that he has gone too far and then resorts to such things as:

“Tell me you love me mom”

“I need love. Give me a hug NOW.”

I want a kiss NOW”

Along with all the demands he begins hanging all over me DEMANDING a hug or a kiss by clawing at me.

Of course, by this time I am worn out and tired of the CRAP. I try to remember where this is coming from inside his head (fear of abandonment/fear of being unlovable/anxiety) and react accordingly. But there are times when giving him what he needs (a hug) feels so ugly and disingenuous after all the chaos and manipulation that I find it hard to wrap my arms around him. I find it hard to find a place in my heart to grant him the grace that he needs. Most of the time I manage to dig it up from G** knows where but there are times it is almost impossible to find and it is at those moments when I feel like I have been swallowed whole, the best parts of me ripped out and flung far and wide. It is at these times when I start crucifying myself for not being able to give my son what he needs because it is such a little thing that feels so big.

Luckily, most of the time I do not get to this place of self torture because as I start to fall down the rabbit hole; I get ensnarled in the tree roots and find a foot hold to make my way up again. But there are times that I would like to keep falling down that rabbit hole just to feel the impact upon landing. To feel the brokenness that results. And when that happens it makes me realize that is probably what Andre is feeling (the impact) and then I find I can go over and give him that hug. A hug that will ultimately mend us both. A hug that that tells him that I love him and he loves me and that we are in this thing called autism together. Forever.

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Drivers Ed

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It’s early in the morning and Paul is sitting at the table with me, sleep still nestled deep in his dark brown eyes. He is studying for his drivers education test and as I look at the almost 6 ft boy sitting in front of me, I ask myself, where did the time go?

When I first saw the boy in the yellow hat, I knew sure as anything else I had ever known, that he was destined to be in our family. In probably the fastest Korean adoption ever, we were on a plane bound for Seoul within 5 months of turning in our paperwork. It was if the universe knew he needed to be settled.

When we saw him at his foster mother’s house he was a chubby thick-boned sturdy 10 month-old already walking faster than the speed of light. The boy was quick and moved like a prize fighter, bobbing and weaving the entire day. Throughout the apartment the drawers were taped shut an indication of the whirlwind that was to enter our lives.

The day we brought him home, he toddled over to his 7-month-older brother, and swiftly knocked him to the floor. Thus a dynamic was put into place in which whatever Andre had, Paul wanted. It’s a pattern that remains to this day.That first day home I told B, “Mark my words there is something different about this kid.” And there was.

We soon noticed that parenting was harder this time around. First came the tantrums the likes of which I had never seen before. They were like HUGE thunderstorms…in your face, with screaming so ragged and loud that I was sure that eventually the police would arrive at our door. Often Paul would rage uncontrollably for an hours at a time. Obsessions with clocks, then water, then spoons developed which lasted for several weeks and then they were gone as if a magician waved his wand only to be replaced by another. Before the age of 2 we were already consulting with behavioral therapists in an attempt to change the path we were on. It wasn’t until Paul was 5-years-old that we got the autism diagnosis, the Tourette’s Syndrome pronouncement came when he was 7-years-old and the Central Auditory Processing Disorder diagnosis a year after that. Then for two years we had ABA therapists in our home 5 days a week working with both Paul and Andre to help alleviate the most pressing challenges that autism wrought between the two of them. Between weekly hippo therapy workouts, psychologist appointments and daily hour-long neuro reorganization exercises, we barely breathed for 4 or 5 years and when we did it was ragged, coming is fitful spasms, like a marathon runner as he crosses the finish line. Sometimes we were broken and worn only making it through the day because we were on autopilot.

But then, miraculously, things started slowly changing. Fewer tantrums occurred. Less resistance. More control. More sense of responsibility. A new willingness to help out and think of others feelings. Slowly all the years of hard work began to slip into place finally resting where they needed to be and Paul began to mature.

Those younger years were often dark. They were sad. They were scary and they were the most difficult of my life but today I have come out on the other side with a newfound appreciation of my two sons, knowing first-hand all the hard work they have had to put into themselves in order to become the wonderful and engaging people that they are.

These days when I see other parents on the on-line bulletin boards struggling with their children; I try to encourage them and assure them that it does get easier as their kids mature. And when I see their pain and fear sometimes it takes me back to mine. When this happens I involuntarily shudder but then marvel at all that our entire family has accomplished together through hard work, fighting the system, and never giving in/up.

This morning I sit at the table watching as Paul studies for his drivers ed test and I wonder…where did the time go?

 

 

 

 

Just ONE F***ing Day

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I am stressed but trying so hard not to be. It’s not just due to the marriage going south thing but with life in general. I am a girl with a plan and for the past two weeks my plan has been interrupted EVERY SINGLE F***ING DAY.

Last week:

Monday: Driving home I had a flat tire

Tuesday: School…”Andre is having a difficult day. Could you bring his stress ball in? ” I think: Sure, of course,  because I have nothing else I need to do!

Wednesday: Andre’s asthma is acting up. ” Can you bring in his inhalor” I think: Sure, of course,  because I have nothing else I need to do!

Thursday: Gracie….”Mom I forgot my lunch and I have no money in my account” I think: This is the first time this has happened all year so how can I refuse? I also think: Sure. of course,  because I have nothing else I need to do!

Friday: Me…”Hello this is Dr. H office. He needs you to come in today to discuss the results of your tests.”  I think: Do you really need me to come in or is this just another way to open my wallet even wider to you? Sigh. I also think: Sure, of course,  because I have nothing else I need to do!

Monday: Paul. Mom I forgot my permission slip and I can’t go on the field trip without it.I think: Sure of course,  because I have nothing else I need to do!

Tuesday: Gracie: “Mom I forgot my homework.” Now normally my answer is “too bad” but she had not called me the entire year and how could I say no? I think: Sure, of course,  because I have nothing else I need to do!

Wednesday: Me: “I’m sorry Mrs. _____. We are running about an hour and a half late so you just need to go ahead and sit down until we call you back for your test.” I think: Sure, of course,  because I have nothing else I need to do!

Thursday: Andre- “Hello Mrs. _____. This is Annie from Andre’s school. He is having a difficult day and he says that the palate of his mouth is burning so he cannot go outside for PE. Could you talk with him?”  So I do. Fifteen minutes later the second call comes. “Can you come pick him up?” I think: Sure, of course,  because I have nothing else I need to do!

Friday: Paul-“Mom, I just ripped my pants playing in PE. Can you bring me another pair?” I think: Sure, of course,  because I have nothing else I need to do!

I know that I need to learn to be more flexible. I know that I need to learn to just go with the flow.I know I should view these moments of the unexpected as “opportunities” to stretch myself and my calendar.I  also know that sometimes “shit” happens but frankly I would like a little more notice when things are going to change from the scheduled program. I really don’t feel like that is too much to ask. SOOOOOO….

Dear UNIVERSE:

Hear my prayer.

I have tons to do today. My stress level is high. Please be kind to me today.

Kindly and with hope,

Me