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.

 

 

 

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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Saying YES To The Ring

I have been pondering for the past couple of days how to write this post. I have started it, deleted it and started it again many times. For at this point, what I am about to write is embarrassing, very confusing, and probably tiring to all who read my blog.  Frankly, I know that if this on-and-off again relationship was happening to a friend or my daughters I would say, “Get the fuck out! You deserve a man who wants all of you all of the time!”

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Yet, sometimes life is not that cut-and-dried no matter how hard we try to make it so. Over thirty years of marriage is a long time together. It is doubly hard when you have two boys with autism and who do not do well with change. Add to that three children who have already lost their original families and splitting up becomes fraught with minefields that just are not present in most families.

Now to tell you this particular story I have to take you back to October. It was then that B asked me what I wanted for Christmas. At that time I flippantly told him a commitment ring but frankly I thought that the possibility of receiving one was nil. Winning the lottery had better odds. And anyway, who doesn’t like a ring, right, so what was the harm in asking?

Fast forward to Christmas night. As we were winding down from the days festivities I told B I thought we should tell the kids tomorrow that we were separating. Tears came to B’s eyes and all of a sudden he called the kids down to do THE board. You see, every year on Christmas day and July 4th, we measure our kids to see how much they have grown (seems we will need a longer board for Andre next July.) Then, just as the kids were about to go upstairs B told them to wait and proceeded to say. “Hey, guys, there is one more present here and it is for your mom.”

With that, he walked over to his briefcase and pulled out a jewelry box and in it sat a woven silver and gold ring. Nothing elaborate (that is not who I am) and nothing too expensive (not me either). As I looked at the ring in shock he said something to me and the kids along the order of:

“The silver in this ring represents our Silver Anniversary (25th) while the gold represents striving toward our Gold Anniversary (50th). In this ring there are little breaks and holes that represent life and how during our lives we have to navigate through them, around them, and out of them; to get back on the path we have chosen. So I am giving your Mom this ring to show her that I am committed  and will continue to try working together to reach our Golden Anniversary.”

My first thought: Maybe he really does love me…and tears

My second thought: I am not sure I want this. Maybe it really is time to be out on my own.

My third thought: Why did he say this in front of the kids?

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Luckily, the next day was Tuesday, the day I see my therapist. She said:

“I’m confused.”

That made two of us.

So we talked about the conflicting feelings this brought up. About how for the last week every time we talked about leaving and splitting up our family we both cried. How our guts were both twisted in knots and how discussing dividing children, assets and animals was devastating. And that in this heartache we had gotten closer at least for the past few weeks but that it should be viewed as temporary.

In the end, I decided to accept the ring…for now. Instead of deluding myself into thinking this ring is a piece of jewelry that signifies B’s commitment to me for life; I have decided to view it as a day-to-day pledge until I decide otherwise.

Last night we went to our joint therapist and I asked for clarification regarding the ring, the commitment and why he said what he did in front of the kids.I will say that I received some very well thought through answers to my questions and that we both acknowledged that we have a long way to go to save this marriage if it is even possible.

At this point I have no real answers about life or the status of my marriage. What I do know is that every day we manage to make it is one more day our children have had a chance to grow older and more mature. It is one more day that we have successfully re-committed to working hard and to trying our best to listen to what is in the others heart and act accordingly. And it is one more day that we have attempted to let love win, move towards acceptance of both ourselves and the other, and its one more time that we have had the chance to try to find peace in a relationship that once had little.

Sometimes life is hard.

Sometimes life is isn’t.

And maybe, just maybe, given a little more time, the hard times will decrease and the good times will grow more frequent and blossom. And maybe someday I will realize good times and bad are just part of life and that is just the way it is and I won’t take it personally. And maybe, just maybe when the good times are abundant I will be able to rejoice in them knowing that I have done everything humanly possible to make them happen….with or without him.

 

 

 

13 And Counting

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.

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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!

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Dear Teacher…

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To My Child’s Teacher:

I wanted to make you aware of something you may not have considered in regards to these “Where I Came From” type of assignments. My daughter does not have a birth picture as most international adoptees do not. This can be very painful to some adoptees when class assignments such as this come around. My daughter was born in Korea where children are adopted in a very legal and orderly manner with children being placed with agencies after birth. Yet, part of her past is missing. And some kids from China are left in public places as it is against the law for parents to abandon a child and in that culture the gender of choice is male. Therefore, often girls are abandoned. In addition, due to the one child policy; abandonment happens to females in high numbers. These children often struggle with the fact that they were “left” somewhere.

In addition, having to include a story of their birth is very difficult because many children who are adopted have no clue about the story of their birth. They can’t say things like my mother ate pickles during pregnancy and cried and cried when I was born. They have no idea of the circumstances of their birth except that in many countires it is one of disgrace and shame. Instead of their birth being a happy time many adoptees feel that it is a time of sorrow where they lost their identity and their heritage.

My daughter cannot answer the questions of the hospital where she was born and who came to see her and how her mother felt. We can answer those questions from when we first saw her picture at three months and when she came home at almost 8 months but this seperates her out from the other kids. In addition, we only encourage her to share what she knows of her birth story with people she wants to and frankly it is not appropriate for just anyone to know nor it is not everyone’s business to know the circumstances of her birth.

These kinds of assignments can be hurtful to adoptees or children who come from “different” families other than a two parent mom and dad type of family. Many kids now come from gay families and may not be comfortable sharing that. Many kids now come from single mother with unknown fathers and may not be comfortable sharing that. Many children come from foster families and had abusive first parents who may have told them over and over things like, “I wish you had not been born.” Many times the birth of a child is not a “happy” time in a family and a child may know that. While the jist of these assignments are made with the noblest of intentions, in reality, these types of assignments are often uncomfortable and hurtful for children.

Just wanted you to consider this from another point of view.

Rare Days

Some days just turn out better than you think they will. B went home with two of the kids while Andre stayed with me. This can be a bit of a challenge because basically Andre likes to be left alone…completely alone. Here we are at the ocean basking in the coolness of the water’s fresh breeze and Andre just wants to stay in his room all day. As a person with autism, finding a spot to feel comfortable is his main priority. Dealing with people and the newness of places and situations are the crux in his craw. I did manage to get him to walk along the cliffs one afternoon but he complained the entire time and made the trip somewhat miserable. He does that when he is doing something he doesn’t want to do…he makes it taxing and a chore in hopes that you will never ask him to do anything like that with you ever again.

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So today, I woke him up and told him we were going to a town about two hours away to take the train. He told me he didn’t want to go on the train but wanted to visit the museum. Unfortunately, we got there 10 minutes after the museum closed so instead we went to lunch, walked around town and went into some shops. It really wasn’t his kind of day but on the way home he said, ” I really had a good day with you Mom. Thank you.” Needless to say, I almost fainted for he rarely lets you know if he appreciates something much less tells you he enjoys your company. It was one of those rare moments that is so surprising and lovely that it suddenly feels as if life has picked you up and carried you away to Nirvana. Everything is right with the world and your place in it and after a weekend in which B talked separation, it was such a nice place to be.

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Later this evening I went down to the Lodge. It was one of the situations that you are trying to talk yourself into doing. Should I stay home or leave. Which will it be? The stay at home option almost won out but I eventually, after a heated debate with myself, chose to go to the bar. I took my drink outside to one of the comfy Adirondack chairs and parked myself in it to watch the sun disappear over the ocean while pinks, golds and yellows filled the sky. Flocks of pelicans flew in V formation past the cliffs while Sid the Great Blue Herron strutted his stuff. The temperature was perfect, the scenery divine and I had the place to myself…until a tall good-looking man about my age appeared out of nowhere. As it turned out he was from the local Buddhist temple complex and as we sat and talked I became “enlightened.” I have always strayed to the edge of Buddhist philosophy for years while attending Christian church at the behest of my husband putting my own religious convictions on the back burner. The talk that this gentleman and I had soothed my soul and it felt nice to be appreciated and admired by a nice man again.

Yes, some days take you by surprise. Today was one of those rare and glorious days and it felt just like a day when my garden is in full bloom!

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Precious Presents

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I have a small group of friends that know me pretty much inside and out…and bless their hearts… they are still my friends. We were brought together by virtue of some shared characteristics of our children. The bond that we have gone on to form transcends our original purpose of providing support to one another. Our relationships are now based not so much on our children’s issues but on our real concern and love for each other. We now enjoy a Friendship that begin with a capital F even if it is mostly virtual.

Many of these friends I have met in “real” life. A few I have yet to meet except out in cyberspace. We have shared our joys and concerns. We have lived each others ups and downs. We have been there for the little victories and some major defeats. We have watched each others children grow and been there when a diagnosis threatened to overwhelm. As a result of sharing such intimacies over the years we read each other fairly well.

Recently, I found myself at a crossroads… a low point so to speak. My friends gave me the encouragement that usually brings me to my feet again. Most important they took the time to give me ideas and options that they thought might make my life just a little brighter. Yet, I remained on my knees and they knew it. Then yesterday I went to our group and found that a member had posted the start of the most beautiful and meaningful gift I have ever been given. She started a list entitled 25 Random Things We Love About You. The list was sincere, uplifting and once again reminded me of who I am and who I want to become. Some things were funny, some serious and some were eye opening but all the things on the list were written with love. When I read the list I laughed and cried. I was truly touched and beside myself with delight. Because of that list I am standing on my feet once again.

A present that affirms you for who you are…warts and all… only comes along once or twice in a lifetime. It is a gift are as rare as the most precious gem. It’s a gift that teachs, stirs, and allows you to remember yourself as you were at your best. It restores confidence, grants healing and puts you back on the path to yourself. It is a gift that everyone should give to at least one other person in their lifetime. Everyone should be so lucky.

I have yet to comment to my friends how I feel about such receiving such a treasure. I mean it is truly like winning the lottery. I find it hard to contemplate about what was said without feeling such a overwhelming sense of gratitude that I have such a group of wonderful women watching my back…I almost dissolve in tears. So lacking any real gift that could compare in return I just wanted to say thank you my dear friends. I want to thank you for giving me your time when I had none to give back and thank you for giving me your strength when I was too weak to support myself much less you. Thank you for giving me your love and your truth. You have given me your best over the years even when I fell short. I am truly blessed to have known each and every one of you. All of you have taught me so many things but most of all you have taught me the true meaning of friendship and for that I will always be grateful and in your debt.Someday I hope I can give back to you what you have given me over the years. For now….all you get is this IOU.

*I wrote this several years ago and just looked at it again. I feel just as blessed remembering this as when it happened. Thank you friends!*

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It’s Been A While

So it’s been a while since I have blogged. Life has gotten in the way. One of the reasons I have not been blogging is because I have been so ill and when you feel that sick just putting one foot in front of the other is sometimes the only thing you can manage to do.

The other reason I have been absent is that I just returned from South Korea. It was a blast. That is not to say that autism didn’t rear its head like a dragon…it did but we managed to keep the fire contained within the dragon’s mouth.

I love Korea. Not just because it is where my children were born but because of the numerous surprises that greet you while you are there. Like it raining and someone just hands you their umbrella and continues on their way. Like the fact that my children are now old enough to sit away from these two big white folks so they can blend in and become part of the majority instead of always being part of the minority. I wish I could give them that freedom every day of their lives. And I like the fact that pumpkin is valued and eaten in so many different ways.

I love seeing the small boats out with the huge freighters as they ply the waters for fish along the coast. I love the hidden temples and that sort of foggy mystical reverence that permeates the air.Riding the bullet trains are almost orgasmic with their down the the minute time tables and the snack carts that sell dried squid. I also love the open markets in which you can find the mass-produced and the antique amongst all the noise that radiates off of the stalls. And the smells of noodles of all kinds, ginger, kimchee and steaming hot bean buns bought just as they come out of the molds are to die for.

There is something about Korea…a people who have been taken over by invaders again and again. Who have known war too often the results of which allows them to then hold the holy and the beautiful above all else…even their pain. Same goes for my children whose understanding of their short lives here is bittersweet. Joy and pain sometimes it is one in the same.

And then we came home and I immediately went in for an endoscopy because I have been so sick with severe reflux for so long. And while I await the results I decided to try the anti-reflux diet and stop drinking coffee…and the next day feel so good that I don’t take the prescription medicine that never makes me feel great. And the next day I feel great. Better than great. And so I stop coffee and pills and one week later I feel better than I have for the past two years.

So now I rejoice. For travel. For discovery. For the happiness of my family. And for my health. And for the oh-so painful re-discovery of myself, my husband and my marriage over the past 18 months.dsc04814

I’m thinking that 2017 is going to be a pretty great year! I hope it is for you too!

 

Seek And You Shall Find

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In a couple of weeks we will be leaving for South Korea. This is a trip which will take our three children back to their homeland. Back to a place where they will “look” like they belong but will not understand the language nor the customs that an individual would who had lived there for their entire life. This will be a trip, unlike the last time, where they will be able to understand the ping-pong looks and stares that people will inevitably give us as they size us up as a family; most smiling but some frowning; as they label our children different from “them.” It’s a trip where they will be in the majority, while we, their caucasian parents, will be in the minority; a role reversal that they can see occur right in front of them with their own two eyes…one which may have epic implications.

I hope that my kids will see the beauty of their first country and begin to feel pride in themselves as Korean-Americans. I hope that the anxiety of autism will not overtake my sons as we walk through crowded markets and experience new ways of doing things. I hope that these amazing children will become stronger in their belief that we humans are essentially all the same and that we share many of the same hopes and dreams as everyone else on the planet so we must treat others as we ourselves want to be treated. And I hope that they find the things that they are looking for, both big and small, that will fill the holes in their hearts that adoption itself creates.

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My wish for them is that they realize that the circumstances of their birth are just that…circumstances… that have nothing to do with them and that these circumstances do not determine whether they are “good” or “bad”  people. That they are who they are… not just due to their early experiences but mostly because of what they have put into themselves to create the work of art that they hang on the wall to show the world.

Korean…American…Californian…Autistic…Thoughtful…Creative… Intelligent…Giving…Athletic…Charming…Inquisitive…Happy…Caring…Interesting… all despite being raised by lovingly flawed parents.

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I hope Korea gives them the chance they deserve and I hope they give the same back to their Motherland. I hope the rich culture, the old stories, the ancient temples, the colorful folk songs and the flavorful food etch themselves into our children’s psyche so that they can reach for them in the future when they need a bit of understanding about who they are and who they can become. Because finding a bit more of yourself and what you are made of is a gift no matter where and when it happens.

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So my hope is that they find those gifts that will be abundant and ever-present as we tour their homeland. May they recognize what it is they need to witness and take it away for themselves and their souls. And may they find these gifts as freely as one finds shells laying on a sandy beach, so that they may they gather them up in their pockets and examine them on another day as they are needed throughout their lives.

Find what you need my sweet children, be happy, and be free!

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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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