Category: sadness

Sorrow as an Autism Mom

I wanted to give everyone more than one post last month, but it didn’t work out. It failed on an epic scale. Now you may not think that it was a fail, but I don’t have another word for it. The month ended up being full of sorrow. Read on to hear my heart.

How It Started

Last month started with a post full of my high hopes as we went into Autism Awareness month. What I got was days fraught with contention, lies, anger, impulsivity, and sadness. Do I know these things are part of living with my son? Sure I do. Do I long for the day it isn’t like this? Yes, yes, yes! I have spent many days in tears on the floor wondering why. I despair of a life I don’t even know.

The proverbial straw that broke the camel’s back was a day that started pretty good. Not too many preteen rebellion rearing its ugly head. Well, as we trooped to the car to go to school, it devolved into a maelstrom of refusal, unpreparedness, fear, and sadness. I had to let go, watch my son go into almost certain failure based on his poor decisions of last week. It is heartbreaking and hard to watch your kids fail, even knowing that there really wasn’t anything you could do.

The Common Struggle

Don’t we all feel like giving up sometimes?

I have long realized I struggle with sharing his burdens and challenges. For instance, I spend a lot of time saying “We have a problem.” instead of “He has a problem.” Many of the first few years of his diagnosis I spent advocating for him and trying to find the best group of practices to help him thrive. For me, what has happened is that I have glossed over some of the things he can do for himself. I get way too emotionally invested in whether or not he succeeds at something. But also whether or not he fails or remembers.

Kids’ behaviors often trigger moms emotionally. From talking to my friends with neurotypical kids, they struggle with this. For me, it is an even stronger tie based on my own history. This is a perfect storm of a child who struggles with impulsivity and anger and a parent who internalizes every confrontation as a confirmation of how horrible they are at this.

The Failure

The day I let him fail, made me feel done as the day unfolded. He struggled a lot last month and it felt as if there were 30 days of chaos. Both in my head and in my home. Feelings of sadness and anxiety and lots of crying after realizing there was going to be an imminent failure. I could not snap out of it. There was no emotional stability. I wanted to give up. The secret here is I often want to give up.

I know I’ve said it before, but I won’t give up on him. Or me for that matter. But the truth is, I live in sorrow a lot.

I Won’t Give Up

I wrote the following words earlier this week: As I listen to the discordant, high-pitched voice trample my love and concern, I dream of the day I don’t have to be my own champion. I wrote them in a fictional setting, but these sentiments follow me into my real life quit often. I thought I had gotten to a place where I wasn’t quite so invested in the behavior of my number one son. I tend to take it personally, though I know he has a number of medical diagnoses that exacerbate the severity of his behaviors, that the words he screams in anger don’t mean anything to him. Yet, I keep running to my room in tears, with my heart-broken and my body heavy with the weight of despair.

I have written in the past about my autistic son who also suffers with anxiety and oppositional defiance disorder. So, he has trouble with executive functioning skills, he has poor memory, he is terribly impulsive, and can’t stop talking to save his life. Also, like most children, he is the center of the universe and wants what he wants. Lately, he has become aggressive again. This time around he is bigger and stronger and louder. I leave rounds of aggression with him and am covered in bruises, and two minutes after he calms down enough to apologize he inevitably acts like there wasn’t a hurricane of emotional tantrum with him at the center. Right this moment, for the second time today, he is screaming about how hurt he is, how much we hate him, how we don’t listen to him, how it is basically our fault as his parents that he is screaming and kicking walls loud enough for the neighbors to be concerned. He is harming himself and breaking our hearts and I don’t know what more to do for him. Have you ever wanted to give up? I WANT TO GIVE UP, I WANT TO GIVE UP, I WANT TO GIVE UP! But I don’t. I DON’T give up. Every day I get up and do it all over again, because he is my child and I love him. But, I am not going softly into the abyss. I continue to work at getting him the best medical care and therapy I can. I am just really afraid that one day soon, the decision on how to care for him will be taken from me and my husband.

Does he understand what he is doing and uses the extreme behavior as a way to escape the things he doesn’t like and doesn’t want to do? Does he really not remember, or understand how he is hurting himself, how he is hurting those around him? I feel I no longer know what is prepubescent boy and what is ASD, or Oppositional Defiance, or Anxiety. Hell, maybe it is some nice combination of it all. That is usually how this works, right? Hardly anything dealing with the mind and body is completely autonomous and I should know that. Only, it is hard to be dispassionate and calm in the face of such anger. I know that I want him to accept and respond to help for this latest crisis, I want him to not only realize his potential but reach it too.

I am scared. I am tired. I am hurt. I will pray and continue looking for a good therapist to add to the roster. I will get up every day and do it all again.

Personal Advent Season

For the past six years, I have been marking each year in remembrance of the day my son died, while learning to dread the anniversary of his due date all the more. Thanks to Facebook’s “On This Day” function, each December 14 I am reminded of all the love and support as the due date dawned without even the chance of his arrival. My mom friends rallied to give words of love and thoughts of me as this date shared heavily among expectant parents, arrived while he had already arrived four months earlier to say goodbye.

It took about two years before the reality of the due date coming with no baby really set in. Frankly, it was a lovely gesture that so many remembered a date spoken of fleetingly, months later, especially after the sudden horror of his being born still. Yet those first years after his death, I was almost wholly transfixed with the date of his death. I dreaded it, I loved it, I celebrated it, I wanted to hide from it. August 11 came each year and I felt dragged back into those frightful hours as we waited for him to be born still. Gradually I experienced the gift of God’s peace on Hardison’s death. Of help in feeling this peace, was discussing the continued preaching of Paul and others after being persecuted in the early years after Christ’s resurrection. One thing covered in the discussion was the idea of not focusing on the persecution, but the perseverance. By keeping our focus on God, we can stay the course by virtue of His love. When we are focused on the persecution (struggle, opposition, tragedy) it is much easier to become angry, disillusioned, and to give up. God’s love is shown in the understanding of our turmoil because Jesus Christ experienced the struggle of human life, in part to aid us during our times of need. I took these known ideas to heart more than ever and eased some of the flailing of my soul that I felt upon Hardison’s death. Even so, I met August 11 with pain long before the date showed up on the calendar every year. Somehow, despite my best efforts it still loomed large. Understandable, I know, yet December 14 would sneak up on me and then strike me down based on friends’ remembrance. Then, this year, I learned to appreciate the coming reminder of his due date all because I made a connection between it and the Christian celebration of Advent.

The Christian advent has come to be all about anticipating the second coming of the messiah. Christians wait for Christ to return and fulfill the promise of His eternal kingdom. Each year during the four Sundays leading up to Christmas, a time which has come to represent the birth of Christ, we look back at His coming and forward to His coming again. Even when not speaking in the Christian sense, advent can be defined as “the arrival of a notable  person, thing, or event.”  While reading a devotional taken from Bo Stern’s When Holidays Hurt, this statement took on a whole new meaning. Ms. Stern says “One of the reasons Jesus came to dwell with us – and is coming again – is to wipe away every tear.” Did your lightbulb go off too, based on your own circumstance or what you have read of mine? The bells were ringing like the sound when you get an answer right on a game show and the lightbulb illuminated. I could look upon the advent of Harrison’s due date as a reminder of the love and joy we were anticipating with the advent of a new member to our family. The way Christians look forward to the second advent of Christ, a member of our eternal family. I will still be heart sore and sad as December 14 arrives, but I can also view it as a personal advent season, a reminder every year of what Hardison means to this family. No longer do I only have to be reminded of when and how we lost his physical presence. I don’t have to be bombarded with sadness once the memory reminders start showing up on Facebook, I can reach back to the happy shock the date originally stood for.

These thoughts on personal advent seasons are not only useful due to the loss of a child. Most loss, sadness, and pain, can be brightened by the idea of the remembrance of the excitement of arrival. It may be you will look forward to the coming of justice, of peace, of love. But look forward in anticipation, not just back in sorrow.

Infant and Pregnancy Loss Remembrance

Today, October 15, is National Infant and Pregnancy Loss Remembrance Day, here in the United States of America. If you have been reading for a while, you may remember the story I wrote about Bereaved Mother’s Day that talks about pregnancy and child loss. Today, many families will attend ceremonies which include waves of light, or candlelight ceremonies to remember the pregnancies and infants gone too soon from their lives.

In our little city, we will attend a candlelight ceremony where our children’s names will be read and we can place flowers at the remembrance statue. Our statue, The Angel Of Hope, is one many cities have, that stands in memory of the children who have died. This statue is based on the one in a book called The Christmas Box by Richard Paul Evans. This small book talks about the death of a child and the visit to the grave where this angel statue sits. It isn’t a story of loss only, it is a small book with an inspiring story of remembrance and cherishing the here and now. After this book became popular, people would write the author wanting to know where they could go and visit the statue in the story, in order to mourn their own dead children. Well, there was no physical statue, only in the author’s mind. Afterwards, Richard Paul Evans had a statue commissioned and it was placed in Salt Lake City, Utah and dedicated in 1994. Since then, more than 120 areas have raised money to bring an Angel Of Hope to their town for grieving parents.

This August we reminisced on 6 years without our #2 son. Today, we will join other parents to talk, listen, and spend quiet time at the statue and in fellowship. In many ways, it is an atmosphere of celebration too. There will be cake and living children running around, along with decorating luminaries and families bringing balloons and other trinkets to place at the statue. A local florist provides roses for family members to place every year also. Yet, there will also be sadness throughout the evening. There will be way too many new families in our group, there will be raw feelings and lots of tears. Yet, I am usually refreshed afterwards. It is a unique experience to be comfortable about such a heavy topic with people. Some years this ceremony is just a lovely way to remember our son, other years it is a devastating reminder of our loss. You don’t know where your grief will have you year by year, but I am very appreciative of those in our community who fill this need yearly. Who reach out, through their own grief, to hug the newly grieving every year. I am feeling good and hope I can be a shoulder for those not doing as well this year. Be kind, be gentle, be understanding to all those who grieve in memory today.

Get Up Anyhow


This past week has been plagued with illness and ridiculous defiance in the face of truth, and that was just my house. You may remember me talking about my oldest son who has ASD (Autism Spectrum Disorder), ADHD (Attention Deficit Hyperactivity Disorder), Anxiety, Aggressive Mood Disorder and is Gifted. He has what is routinely described as asynchronous development and is twice exceptional. You can read about those terms here and here. For the past two years my daughter’s behavior has deteriorated at a rapid rate and while I knew she is Gifted with asynchronous development, we thought otherwise she was a neurotypical girl, so did the doctors. Yet, I know that has now changed and our daily interactions just bring it to the forefront. Now I am in a household with two people struggling as I struggle to learn how to help them. Soon she will be going for a round of new evaluations but until there are not only answers but solutions to try, there is just this space filled with strife. It is debilitating to live in this constant, daily strife and I often fill angry at the turn of events. I also feel so guilty about these feelings, but after 6 years of dealing with my oldest son, I know that feeling the guilt is normal and you have to learn to acknowledge and move past it. My son has come a long way with the help of a lot of professionals, and it seems as he gained more control, my daughter lost more control. He still has a long way to go and now I am having to start over again with her. I feel beat up, beat down and despondent many days. I don’t want to engage, I don’t want to face another day where people I love are constantly using me as a whipping post. Knowing that they don’t mean it, don’t do it on purpose, and barely are aware of their wrongdoing doesn’t always help me cope. So I have to learn to help them, myself, and other people to understand the struggle that doesn’t look like struggle at all. We look like the typical family, they look like every other kid many would call normal or fine. But they aren’t. Daily they struggle with the world around them, the world in their head, the expectations of everyone they meet. They can’t always keep instructions straight, things they do daily are often forgotten from one moment and day to the next. They are literal, and truthful, and hurting, and scared, and smart, and funny, and loving, and caring. They are multi-faceted like me and you but most people can’t see past the differences in them to embrace them. I am praying to be strengthened moment by moment to help them bridge the gap, to raise awareness, to be a good example. But let me tell you, I am not always a good example, I lose my cool, I yell, I use bad words and I walk away and cry over the reality of my existence. I scream at the unfairness, I rail against the pain of waking up every day to do the same things, I worry if they will always need me as they think they do, sometimes I want to give up and I voice it out loud. Yet, I get up every day to do it, to find another study, doctor, therapist, school, book, video, and tool to further their growth and development without killing the things that make them unique and extremely special. I am tired, I am weary, I get up anyhow. They look to me for everything and while it is draining, it is also a bit amazing. The amazingly beautiful things they accomplish keep me going and are a part of why I can Get Up Anyhow.

I have found this book by Tony Atwood to be helpful with High Functioning Autism/Asperger’s Syndrome. Most have heard of the groundbreaking work of Temple Grandin and this book is one we have in rotation at home. I have heard wonderful things about this book for Gifted/2E children and it is on my wish list. This book about emotions in Gifted/2E children is also on my wish list, as it describes my daughter well. Maybe you have found other books or sites helpful, feel encouraged to share them in the comments.

Words Can Be Abusive



This is a hard post to write as it will talk about the often overlooked subject of emotional abuse. Often we hear about physical abuse but emotional abuse is often far more prevalent and is designed to make us think less of ourselves, question our motives and actions, isolate ourselves from friends and family and truly leave our substance in the abuser’s hands.

An often used definition of emotional abuse, also known as psychological abuse, is “any act including confinement, isolation, verbal assault, humiliation, intimidation, infantilization or any other treatment which may diminish the sense of identity, dignity, and self worth” which I took from the site healtyplace.com. I know that emotional abuse can be slow moving, insidious and happen to anyone at any time or any age. You may think of yourself as tough, independent, and strong minded. Doesn’t matter, it could still creep into your life, perpetrated by someone you trust, and change you into a person who questions everything about yourself. I knew myself to be strong minded and tough, with firmly held  beliefs, but I too was caught in a web of lies told to me by someone who professed to love me, but really just wanted to control me and my environment because that made them feel better. It was hard to hear friends tell me that they were concerned for me, I couldn’t even see what they were talking about. For me, the wake up came when physical abuse tried to rear its head, I immediately got out, but it took physicality to get me away, then time and therapy for me to understand that the years of words structured to hurt had actually harmed me in ways I hadn’t noticed. Some signs include yelling and swearing, mocking, ignoring, and victim blaming. Please listen to those around you with insight and if you fear you are someone you love is being abused emotionally, understand that often just breaking up isn’t enough, they may need help to stay safe and to work through the mental fallout of the abuse. Mental health providers are especially helpful in these situations. There is a list of hot lines available at healthyplace.com also.

Recently I visited a very close friend at their home. They were excited for me to meet their new love interest and I was excited too. Only the excitement was short lived as the reality intruded and their loved one spent the weekend scaring me witless with their screaming vulgarities and aggressive behavior. My beloved friend was worried it might not be working out, but scared this love interest would harm themselves if asked to leave. I was terribly afraid we would be harmed because they had not been asked to leave. I was torn between leaving in a hurry for fear of my own safety and a deep need to stay and support my friend who I was just as afraid for. I made accommodations and talked myself into staying in a volatile situation for the care of someone else. See, I was already not listening to my inner voice which shouted ‘RUN!’, but I let the emotions of the situation dictate my actions. It is so easy to fall into this type of thinking and inaction. My choices did nothing but waste my time and make it more difficult to leave when the time came. Conflicting schedules kept my friend and I from ending our weekend on the high note it started on. I left without ever talking to them from the heart, without being able to hug them and reassure us both about what I had been a silent witness to on the fringes of the relationship, known but never even seen to the new love interest. I still don’t know what the lover looks like, only what they sound like in heaving anger and screaming blame. Only the fear they instilled in everyone in that house and my own that the fear and anger would leak out to stain us all.

I left things unfinished and unsaid. I pray that you won’t do that. I ask that you speak out, seek help, and fight for the psychological health of those around you. I must return to this situation and try to assist and I write this in hopes it touches even one person in their time of need, or one person who then recognizes the need in someone else. Change takes courage, I pray the courage of us all.

Where Have You Been?

Well, I thank you for asking. It has been a blurry two months. August is always hazy as I relive the stillbirth of my son and try to eat my feelings away while the world goes on around me. Even with the outlet of this blog, I couldn’t find anything redeeming to post about, I didn’t figure my sadness was worthy of a post. Looking back, I should have known instead of being depressing, it might actually have been helpful for others and cathartic for me. Writing is often helpful in that way. But instead, I took my time with my feelings and memories. I have learned that taking this time to honor whatever I am feeling is very important. We are often taught to suppress our feelings because they can be unsettling to others. Yet, that leads to a suppression of ourselves that eventually leads to a destruction of ourselves and profound unhappiness. I think people confuse the idea of happiness. Other people don’t make us happy, but we can be happy with others. Happiness blooms from within our own flawed selves. Knowing what makes us tick is the epitome of being happy. 

One problem with taking that time, is that by the time I get out of the haze, half of September is gone, the next half is spent worrying over our full October calendar. Also the realization that I won’t really be leaving the sadness of August behind anyway, that sadness follows you like a hungry puppy. I don’t spend all my time being sad, but the reality is that being sad is a constant since that day my son died. In October there is a birthday, an anniversary, and Infant and Pregnancy Loss Awareness Day. Let’s not forget the kid favorite Halloween, in the 5 years since my son died I am sometimes so under that I forget to ask the older kids what they want to be until it is almost too late. I have to sell my right arm for the costume they really want because it has been locally sold out since September. Then I have to pick over the left over candy that no one even likes because I didn’t buy the good stuff for the trick-or-treaters in time! See, I don’t always have this parenting thing down. Keeping all those balls in the air feels heartbreaking sometimes and heartbreak is heavy! This year, I am happy to announce that I didn’t have to search Internet hell looking for that elusive costume because I actually came out of the haze in time to keep the Halloween ball up in the air! I take my successes where they come.

So, no August posts, no September posts but I am determined to get back to one of the few things that bring peace to the voices telling me despondent things about myself. Peace is a highly sought after commodity in my world. I hope you have missed my voice, even if you didn’t, I hope you will stop by again and see what new thing might be happening.

I have been in the dark of sadness and memories, I want to be back in the sunlight with the rest of the world. To that end, I look forward to sharing some words to bring myself a little sunlight and maybe you too. Join me whenever you can.