from another blog…...

welcome to the club – evolved
// a diary of a mom

In May of 2009, I wrote a post that would, in many ways, come to define Diary. It has been shared around the world, reprinted in more languages than I can count, appears in two anthologies, and, in a slightly edited version, will soon debut in the inaugural issue of Zoom Magazine.
When I looked at it recently in order to edit it for Zoom, I realized that it was missing something. Something big.
So for the first time since 2009, I’ve changed it.
Because it matters.
A lot.
And everything, no matter how seemingly immovable, is subject to evolution.
Thank God.
The amendment is in bold and plum. Can’t miss it.
-
My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will find an exception to that rule. A life-changing, delicious exception.
You will discover a world of both peers and adults who share your child’s unique wiring. You will come to rely on their invaluable insight as you make your way forward. You will discover that they are part of a rich, vibrant, beautiful community that awaits her with open arms and open hearts. You will be buoyed by their very existence, by the palpable relief of understanding that your baby is not and will not be alone on this journey. 
You will think you can’t handle this. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
With love,

Jess

The Language of Love

The 5 Love Languages for Children

Last week someone loaned me this book: The 5 Love Languages of Children by Gary Chapman and Ross Campbell. I’ve been impressed, and I will share what I’ve gleaned from this very readable, practical and loving little gem of a book. It is helpful for parents of typical children, and may be especially useful for children with special needs.

The 5 Love Languages are physical touch, words of affirmation, quality time, gifts, and acts of service. While all of them are important, usually, after age 5, one of them becomes primary. Before age 5, use them all generously. Most of us love our children, but sometimes they do not feel our unconditional love. And perhaps it is because we are not showing them our love behaviorally in their primary language. Sometimes, even when we don’t feel loving because of stress, work, a fight with spouse, or any number of other reasons, we can still behave lovingly.

Let’s take them one at a time and I’ll give you some examples from the book, as well as my life and clinical practice with children.

Physical Touch: Hugging, stroking their hair, rubbing their back, playful wrestling, piggy back rides or rides on shoulders, kissing hello and good bye, holding hands, snuggle while watching a movie, allowing or encouraging children to sit on your lap. These are just a few. I’m sure you can think of more.

One of the problems with a child who has touch as a primary love language and doesn’t get it, is that s/he may seek it elsewhere inappropriately. 

And there are children with sensory issues who do not like touch. With them, it is important to respect that and at the same time, find some tolerable way to give them a little. A mother told me once that her daughter really was averse to physical touch. Yet when they watched movies, especially on her computer they would touch their heads together and it felt like the sweetest thing in the world. 

If as a parent you are uncomfortable with touch and your child’s primary love language is touch, it will be important to find some way to touch your child at least once a day and build up from there. It can also be helpful to touch your own skin, rubbing your arm gently, and your shoulders and even your ankle and legs. That will help you become more comfortable with touch.

Words of Affirmation: Telling them something specific that they did and that you really appreciated; putting a word of encouragement or a compliment in their lunchbox, or frame a child’s drawing telling them why it means so much to you. If you have to be out of town, write a note for every day you are away letting the child know you are thinking of them. Be specific with praise (not “what a great picture”.....but rather,  “I love the red in that picture”, or “I get the feeling of movement from how you drew that...how did you do that?” Put a long sheet of butcher paper on the back of their bedroom door and write something complimentary every day about what your child did or said. These words become like deposits in an emotional bank of sorts. And when the going gets rough the child can go to the bank and remember/feel the praise and beautiful effort that the parent recognized and put into words. That can provide emotional support in a dark time.

Quality Time is just what it says: spending time with your undivided attention on your child, talking, laughing, playing. The book has 2 pages of suggestions if you need some ideas. In my practice, I usually recommend scheduled, regular quality time with each child every week. The child will look forward to it and it becomes like sacred time, especially if there is more than one child at home. But even for only children, this time with undivided attention is invaluable. I did this with my daughter for years. It was not an easy task to not use the phone or computer, to not fit in a load of laundry, or to not let anything else get in the way of that 30 minutes once a week. I know she loved it and felt closer to me, but I was amazed at how much closer I felt to her. Actually the first time we did it, a lot of anger came out. She was aggressive with the toys. I asked what she was angry about and it all came tumbling out. It was mostly about the divorce, going back and forth, and how much busier I was. I was able to hear and listen in a way that I hadn’t done as well previously. It became a lovely ritual for us. And in my office, a father told me that when he took his son to the park, he was annoyed that his son kept asking him to play with him. He wanted him to go off and play with the other children. But with some reflection, he could see his son wanted to play with HIM, not anyone else.

Gifts: At first I bristled against this idea. I don’t want children to become entitled or expect gifts constantly. But what I got from this is that sometimes gifts make a child feel special, loved and seen, especially when given unexpectedly. I had a mother who bought her child a small gift every payday. The child loved the gifts and it made her feel loved. You can find a feather and wrap it up or present it in a special box, or gather a bouquet of wild flowers, or dedicate a song to him/her, or buy tickets to a concert that you know h/she will love, or create a treasure hunt with a map to the treasure. It is the surprise of the gift and the knowing what the child likes, that will deepen the love bond between parent and child. There’s nothing like feeling seen!

Acts of Service: One mother told me the best thing she could do for her children was make them a sandwich. Acts of service are times when we do things for our children that we don’t normally do for them, like cleaning their room or doing a chore that is usually theirs. It is also helpful to do acts of service in the community together, like volunteering at a soup kitchen, or donating toys to a shelter.

You have to watch your child carefully to discover which one is their primary love language. Sometimes you can give your child a choice of how to spend time together, offering two from different categories and see which they prefer. For example, “I have some free time tonight. Would you rather watch a movie and snuggle on the couch or go buy you a new pair of tennis shoes?” (Quality time, with physical touch tucked in there, or a gift.)

I highly recommend the book. Speaking your child’s love language can help your child receive on a deeper level the love you have to give.

Frustration…..How To Deal With It

Frustration......How to Deal With It

We decided to dedicate this week’s Mom’s Group for Mom’s of Children With Special Needs to FRUSTRATION. But you know, it applies to every parent and spouse. Who among us has not felt frustrated by our child or a lover or a friend? 

We asked for examples of frustration. There were so many.  I will  focus only on one here. Almost every one of us were frustrated by our kids not brushing their teeth. That was a surprise to me. I thought I was the only one who had a child who refused to brush. In retrospect, I think it is a sensory issue because most of our children have these sensory issues, and brushing hurts in a way, and feels intrusive in another way. One Mom said she wished her child had all her teeth! Due to overcrowding, some permanent teeth had to be removed and she was given a partial dental plate. But sometimes she doesn’t wear it, and the mother would be so frustrated/put off by that. Our children with Special Needs somehow don’t really care how others perceive them, whether it be odd clothes, bad breath, or social faux pas. But it does frustrate us, who keep giving them advice and direction, all the while trying not to be intrusive, even though we are. One mother told us she keeps a toothbrush in the car for her and her children and they brush at red  lights on the way to school making it kind of a game and easing the tension around this important self care task. On and on, the examples became comical to us as we related to each and every one of them. One mother said that she realized with relief that her children were not the only ones who were weird. Our fear that they will be excluded socially or be rejected and isolated drives our “nagging”behavior and intrusiveness.

But what is a mother to do? Well, first of all we need to heed the saying from AAA....H.A.L.T.... for us and our child. Don’t get too Hungry, too Angry, too Lonely or too Tired. These, or even one of these, is a set up for children to meltdown, not listen, act out. And for we mothers, they can rob us of the stamina and patience we need to deal with a dysregulated child. 

We can reach out to a friend or someone who will understand, we can take a short time out for ourselves ( a bathroom trip, or go to our bedroom to breathe and self talk, calming ourselves); ask a spouse or partner to take over for a bit while we pull ourselves together. Probably there are other strategies you have come up with, which I would love to hear about.

But then there is the repair routine created by The Circle of Security team. (The Circle of Security Intervention by Bert Powell, Glen Cooper, Kent Hoffman, and Bob Marvin

The first is when we are upset and our child is upset, we need to calm ourselves and remember that we need to be bigger, stronger, wiser and kind. And remember our child needs us, no matter what.

Secondly when we are calm enough and our child is still upset, we need to take charge so our child is not too out of control. Sometimes it is helpful to change location like taking a walk outside or going to a designated “time-in” spot where we are together until feelings begin to change. 

We help our child bring words to his/her feelings. (“You seem really upset. I wonder if you are angry? You don’t like it when I say no to you. Does that make you feel like I don’t care about you or what you want?”)

Then we can acknowledge our feelings.(“When you throw things at me, I feel scared and worried”).

Stay with your child until s/he is calm enough. Stay in charge and stay sympathetic.

When both of us are calm enough, we can use words to help the child talk about the feelings and needs s/he is struggling with by listening and talking together.

Then we can talk about new ways of dealing with this problem when it comes up in the future. It is helpful for children to have more options of how to deal with difficult feelings. This bodes well for dealing with future issues.

And what the Circle of Security says is that “bottom line it is the relationship (and only the relationship ) that will build my child’s capacity to organize his/her feelings.” Ruptures in relationship are rooted in a need to reconnect. When we remain in charge as someone who is bigger, stronger, wiser and kind, feelings will settle and he relationship can be repaired.

There is no such thing as a relationship that does not have rupture. The key and strength of the relationship depends on the repair, the quality of the repair. So when we feel like we have blown it, we can use this repair routine and reconnect lovingly with our child. 

And one last thing.....some of our children have really annoying habits. Often they are self-soothing or sensory integration issues. Our children have little control over them. Shaming them only makes them feel badly about themselves. We need to soothe ourselves and have compassion for them whenever we can.

Bless you for what you do for your child!

Tell me YOUR stories.

Shame and Judgement

Looking for writing inspiration this morning, I found an article in my local Sunday paper by Darlena Cunha, ‘Well Off, And Then Suddenly Broke”.  She who wrote about being well off in 2008 and then during the financial/housing crash in ‘08 found herself poverty stricken with new born twins. She resorted to getting Medicaid and assistance from the Supplemental Nutrition Program for Women Infants and Children (WIC) to feed her premature twins.  She writes poignantly of the shame and humiliation she endured using her coupons. The stares, the pity, the verbal condemning remarks, have stayed with her for years, even after she and her husband crawled out of the hole of poverty. The line that struck me, was “Poverty is a circumstance, not a value judgement.” 

Judgement and shame. How many of us have experienced this devastating dual experience and continue to experience it? People with chronic illness, people of color, victims of sexual assault, parents of children with special needs, children with special needs, the whole LGBTQ community.  The list could go on and on. I hear their stories every day. My heart aches for these people with bruised and battered souls and egos. I get angry, I get sad, I feel a certain kind of hopelessness. And then somehow I am in connection with them and I fall in love with their spirit and their ability to persevere despite their circumstances in the face of such adversity. Because they experience from a therapist, someone who gets it, a flicker of hope, of self love can begin. But what if they had experienced this understanding and empathy as children from their parents?

Two things come to mind. How do we raise our children to have compassion and recognize the universality of being human? And how an act of kindness can make all the difference in the world to someone suffering.

It seems that shaming and punishing somehow became an acceptable way of parenting our children and teaching them right from wrong. Maybe because that was how we were parented. Maybe because the church taught us this. Maybe because schools and teachers taught us this. For sure, shaming and punishment have been used for ages in homes, churches and schools, all places where children are being raised. 

You know what I mean by shaming and punishing, right? Examples: A mother saying to a 3 year old who wet her pants, “Shame on you!”. Statements  like, “What is WRONG with you?”, “You are a disgrace to this family.” “You are naughty.” “You deserve to fail.” “You are lazy.” “You will never amount to anything.” “You are a bad boy.” Even statements like, “Get over it.” are demeaning to children. I worked with a family who came in with their daughter and were upset because she had pushed a girl, hard, in the lunch room. The parents were admonishing her and trying to teach her that that behavior was unacceptable. I asked her why she had done it (pushed hard). She told me that the other girl had followed her in to the bathroom and was peeking under the stall. And she had done that more than once. The parents were of the opinion that my client should get over it and ignore it. I was appalled by the “peeking” girl’s behavior. I responded with concern for how humiliating that was for the child in my office. Did she tell the teacher? No, that would be tattling. I comforted the child and let her know I understood why she was angry and had taken matters in to her own hands. I told her she needed help dealing with that other child and she needed her Mom to go in and talk with the teacher with my child client in hand.  My little client started crying and climbed in to her Mom’s lap pouring out more stories of “abuse” by that child.The Dad later told me he never would have imagined that showing compassion in that situation could have been the “right” thing to do. He felt she needed to toughen up and not take everything so seriously. But in retrospect, he saw how comforted his daughter was and how it empowered her to speak up when someone is doing something hurtful to her. She did not have to endure that humiliation, and more by her parents. By listening and supporting her it helped her feel listened to and not shamed. The end of the story is that Mother and daughter had a helpful talk with the teacher, and it turns out the peeking girl was very troubled and got a referral for therapy herself. I talked with my client the next week about how the other little girl had some troubles of her own (i.e. compassion for her, not retribution) and she needed some help. So by letting us know, the other little girl hopefully would get to talk to someone about what was bothering her. Can you see the circle of shame here? And how we hopefully interrupted it? It does take time, but it gets at what is going on underneath.

Another case involved a sister pushing her brother over on a stool. When I suggested that the girl might be jealous of her brother and  she needed a “time-in” rather than a time out, the parent protested, saying, “But isn’t that rewarding bad behavior?” A “time-in” is when you keep the child close to you for the next little while, as you attend to chores. The girl needed attention from her Mom. Attention seeking is what children do and what they need. To admonish them and send them away to their room alone only makes them feel bad, ashamed, lonely, misunderstood and sometimes more revengeful. You can better believe she will get her brother back at a later time for getting her in trouble,  and she will be mad at her parents for the “punishment”. To talk with her about what happened, and her feelings of jealousy toward her little brother will help her move through those feelings. 

Shame and punishment beget shame and punishment to others and to oneself. The hardest aspect of this in therapy with adults is to curb the tide of self blame, self shame, and self flagellation. We internalize what was done to us and we do that to others (including our children), as well as to ourselves. In the story of the mother of twins on food assistance, shame was rampant. To end this cycle within ourselves, we need to learn to forgive ourselves for whatever we did or did not do and understand the context, which will surly help make sense of our actions. The mother was doing the best she could to feed her babies under the circumstances. The issue of forgiveness is huge....better leave it for a later blog.

One last thought. Don’t underestimate the power of kindness. If you see a mother struggling with her child in public, or you see someone with food stamps in line ahead of you, or you see a beggar at the store, a warm smile and a nod of understanding can make such a difference compared to a sneer, or a sound of exasperation, or eye rolling, or a shaming comment. And know that your children are watching you. They learn by our actions as well as our words.

Know that I know you are doing your best. Remember that you can change your whole life by simply changing your mind and attitude. Be well. And please tell me your own stories!

A Mother's Aching Heart

What Do You Do When Your Heart Is Aching and Breaking For Your Child?

In some ways I am so lucky and blessed to have my daughter be so successful. She is smart and articulate. She is wickedly funny. She is careful with her (my) money. She is responsible and honest. I love her politics!  And she is in college pursuing her passion. What could be the problem?

She is lonely. She has a hard time initiating with friends and waits to be called or texted. When no one does, she feels no one likes her and that she is all alone in the world. I don’t know what to say, then. If I tell her how awesome she is she responds with, “You are my mother. You are supposed to feel that way”. It doesn’t help her feel better at all. If I give her advice (oh God.....dreaded mother advice) like maybe you could invite someone to do something with you. She says she doesn’t know what to do and if she can’t even get a response to texting “Hey, what’s up?”, she doesn’t think anyone will respond to an invitation. She is isolated and doesn’t leave her apartment for days. 

Argh! My heart breaks for her. And she doesn’t want to come visit me or have me visit her. Without the structure of school, she is at loose ends. So I try to listen empathically. And then she reassures me that she is fine and will be okay. She knows my heart is aching for her.

I’m imagining that there are many mothers of kids with Special Needs whose hearts break and ache for their children every day. When they come home from school having been bullied, or mocked, or left out, or the last to be chosen on a team, what can we do? For them; for ourselves?  Our kids have to deal with a cruel world that misunderstands them and doesn’t support them in the ways that are needed.

 And  parents who have children with a chronic illness, or a mental illness.....how do they maintain an attitude of bigger, stronger, wiser and kind? How do we listen reflectively? How do we not  pathologize them or infantilize them. And how do we keep ourselves and them from being in a state of denial refusing to address the reality of the situation. How do we not give up on them? How do we face hopelessness? 

How do we explain them to judgmental, “well meaning” friends, teachers, acquaintances and relatives who infer or directly accuse us of poor parenting? How do we deal with our beloved child’s isolation; as well as our own?

I would love to hear from you readers about how you have dealt with this in your own situation. For me, I have run the gamut. At first, I worried silently. I loved her with all my heart, and yet I knew something was wrong. Her Dad thought I was being critical of her and seeing problems when they were not there. I think this is typical in many families where one parent senses something is off and the other defends the child, causing a rift between the  parents. This can go on for years and is so painful to both parents who have different views on what is happening and very different styles of dealing with their children.

After worrying silently, I went to professionals for assessments and evaluations trying to gain more understanding. This is an extremely costly endeavor and invokes such anxiety in parents and children. The parents are scared to death to find out something frightening and the child, no matter how young, is wondering what is wrong with me? Why am I going to all these doctors?

As a child therapist, I do my best to help families with this phase. I am able to use non -judgmental language, and accurate descriptions to help everyone understand what is going on. I must say that I have had mostly great experiences with this, probably because I have been there and know how to talk to the parents and kids with love and compassion about differences.

My next phase was trying to change the world for my daughter. I was in the school helping the school counselor devise empathy training to help the other kids understand her differences. The counselor told me she had done this in my daughter’s 6th grade classroom, and described to her classmates how kids with asperger’s syndrome have no sixth sense (social sense). And that can make them seem awkward or “strange”. But it is not their fault; just like it is not a blind person’s fault if they can’t see. And you wouldn’t make fun of a blind person or tell a blind person to cross the street without assistance, would you? In the same way, the child with a social difficulty needs help and understanding; not derisiveness or tricks being played on them. My daughter apparently raised her hand and said, “That’s me. That’s what I have.” (So asperger’s -like to do that). And several classmates apologized to her right then and there. She  stood up and said, “I will accept your apologies. But you shouldn’t make fun of anyone for any reason.” My heart swelled with pride, but it was also aching for her. She was so vulnerable.

And on it goes. I advocated for her. I tried to raise consciousness about kids with Special Needs. I fought the school system to get her accomodations. I wrote about anti-bullying in the newspaper. But I often cried myself to sleep and worried. I believed in her and knew she would be an outstanding human being. But when your child suffers, you suffer.

As I’ve said before, having other mothers of children with Special Needs to talk to has been invaluable. Finding self compassion has been helpful. And at some moments, I find this awesome connection with her. That makes my heart sing.

Please share your stories with me. It takes us reaching out to each other and saying, “I feel you. I feel your pain”  to bear an aching heart. Bless you for all you bear for yourselves and your children. We need each other and they need us.

Self Compassion

Self Compassion

We talked about self compassion in our Mom’s group this week and it brought a lot of emotions up for me. So I thought I would write about it and see if it touches a chord with anyone else.

I’ve learned about self compassion from Kristen Neff, Brenee Brown and Oprah, to mention a few resources. (You can google their names and self compassion....many youtube videos will come up). I’ll give you my interpretation of it. Self compassion is loving and caring for yourself the way you would for a dear friend. It is having unconditional understanding and empathy for yourself. 

Why is this so difficult? Why does it not come naturally for us? Why do we have to learn it? Why does it seem foreign to us? 

For me, I think I confused it with narcissism, selfishness, or even pride which was one of those seven deadly sins in the Catholic church. It seemed counter intuitive. When something “bad” happens, like a car accident, or a child melting down in a store, or a bounced check, or someone screaming at you, shouldn’t you feel shame and and want to hide? Shouldn’t you “take responsibility” for your part and beat your breast with mea culpas? OMG this could last for days or longer. Shouldn’t you beg for forgiveness and say how “bad/wrong” you were?

And then there is our culture of shame and wish for punishment/revenge. Our culture wants to make poor people feel like it is their fault for living in poverty. Isn’t this the land of opportunity? NOT. Our culture makes victims of crime like rape or domestic violence or racial inequality feel shame. Our culture makes parents of children with Special Needs who act out when over stimulated or act inappropriately in public situations feel shame. How sad this is. Sometimes this feeling of shame can last for years: sadly, even a lifetime.

Most of us were not treated with compassion as children when we did wrong, or when we were needy and alone. How could we develop self compassion if it was not shown to us? 

When was the last time you felt understood/cared for by being shamed and blamed? And did that admonishment make you feel like you wanted to do the “right” thing? Often parents shame their children when they lie, thinking it will help correct this behavior. But usually what happens is they lie more, because they feel shame for their behavior and can not stand more shaming.

I remember telling my daughter that if she did something wrong and told me the truth about it, she would get a “small” consequence. But if she lied about it, she would get a much bigger consequence. I had this conversation with her, on our way to Kaiser where I needed to run in and pick up some meds. She was about 9 and wanted to stay in the car by herself. I locked her in and told her to stay there. When I came back, she was in the back seat and had obviously been in and out of the car. I asked her what she had done. She thought about it and asked me if it was true that if she told the truth there would only be a small consequence. I assured her, yes I would keep my word. So she told me she had had to go to the bathroom and got out of the car and peed in the parking lot because she didn’t dare to leave the car to go in to the clinic. She had just gotten back in when I arrived. I understood she was trying to do what I said by not “leaving the car”, but she was in a bind and had to pee. I was not thrilled that she peed in the parking lot, but I got her dilemma. I could have shamed her and told her to never pee outside in public like that. But I chose not to and she escaped a consequence. We eventually developed an ethic of trust and openness. No shame, no blame.

So when it comes to ourselves, how do we have self compassion?  Kristen Neff recommends wrapping our arms around ourselves, or holding our own hands, or putting our hands over our heart. Physical touch is so comforting. She says, “we can be soothing with ourselves, saying that this is a tough situation. So difficult. Oooooouuuuu, sweetie, this is hard”. We can comfort ourselves the way we would a child or best friend. We would never tell a friend that she is irresponsible and stupid to bounce a check or to have gotten into a fender bender. Why would we speak to ourselves that way?

I was lucky in a way to know that God loved/loves me unconditionally (one of the few, but important benefits of Catholicism). When I learned about self compassion, I tried to embody God speaking to me.  S/he was all loving, all knowing, all understanding and compassionate. That’s how I found my own self compassion.

As mothers of children with Special Needs we need to find that self compassionate voice.... either someone you know, imagine, or make up. It is essential to healthy functioning when we live in this critical culture. And I believe, the more self compassion we have, the more we will attract people with like minds. And the better able we will be to give this to our children, who so need it. Living with Special Needs as a child or parent is daunting in our culture. Please check out self compassion on YouTube and practice it daily.

I’d love to hear your thoughts and experiences.

Much love and compassion to each and every one of you.

Mother's Day, 2014, Post Script

Mother’s Day, Post Script

No sooner had I published the earlier blog than I realized I had not acknowledged the mothers who have lost children, either through death, mental illness, incarceration, alienation and probably many more ways.

This is a tough day. My heart goes out to you. Again, it is okay to grieve your loss. This blog is about being real. You don’t have to pretend with me or anyone who reads this blog. Motherhood is fraught with pain and sorrow, sometimes. I commend you for all you did to try with your child, all the ways you loved your child, all the ways you helped your child, all the ways you held your child.

Much love to you.....

Mother's Day, 2014

Mother’s Day

It is with a heavy heart that I am writing this morning of Mother’s Day, 2014. It’s not about me and my daughter. She and I had a lovely day together yesterday. She even let me help her clean her apartment. I know, seriously? Letting me help her clean was my present. And her bathroom and kitchen are sparkling!  Makes my heart sing. We did break yet another vacuum (the third she has had), but I ordered her one last night and hopefully it will help her do the finishing touch when she gets it tomorrow.

Mother’s Day brings up so much pain for people; and, yours truly, had so much sadness yesterday. The family members of two different people I know had someone in their family die tragically yesterday. They were unrelated. I feel the fragility of life today. I feel the immensity of love. I feel the sorrow of loss.

Today I am holding all the people who have lost their mothers or grandmothers; and all the mothers and grandmothers who are holding the children suffering the devastating loss of a parent. It is unfathomable.

I remember talking to my mother-in-law who lost one of her sons when he was only 7. I asked her how she managed to go on. She said, “You just do.” And that’s what it is. You keep going somehow by the grace of God. 

To all you mother-less children, I want to send you a blessing and hope that you can find your own internal good mother who loves you unconditionally. You need her. You especially need her as you grieve your “mother-loss” today. If there were any way your mother could be with you, she would be. Your inner mother can embrace you as your tears flow and stroke your head with gentle compassion. 

And if you are missing your grandmother today, honor her in some way; with a flower or a poem or a lit candle. It can soothe your heart to give agency to your grief.

Not all of us miss our mothers today. Mother relationship is so complicated. If you do not miss your mother today, let that be so and be okay. You get to have your own feelings. They don’t have to be legislated by Hallmark greeting cards or movies. I hope, though, that you have found a good friend, sister, therapist, auntie, cousin, mentor or inner mother to give you that sense of unconditional love that you so deserve and need.

And to all of you mothers and grandmothers who are doing the work of mothering, I give you high praise for the most difficult job on earth. I thank you for helping to make this world a better place.

In gratitude, Happy Mother’s Day.

Discipline

One of the hardest tasks for a Mom of a child with Special Needs is discipline. When do we say “No”? How do we assess whether the child can legitimately do something and when s/he can’t. What is reasonable to expect? What is a reasonable consequence, if we even accept the idea of consequences. When do we advocate for them without giving them a sense of entitlement or infantilization or helpless dependency. Do our other children think that the child with Special Needs gets away with too much? Do our husbands think that, too?

I wish I had the answer to all these questions, but I think it has to be addressed and assessed individually in each family. One thing I do know is that if we find ourselves getting unreasonably angry or judgmental or disgusted with our child, then something needs to change. It could be that some limits need to be set, or that some limits need to be enforced. Or it could be that our limits are too demanding, too harsh. Or it could be that we need some rest and recuperation. Or maybe we need the companionship of someone who will understand. I hope you can find that here.

I was raised so differently than how I parent. My mother was an angry, resentful woman who probably should  never have had children. I love the cocktail napkin that shows the woman serving cookies and the speech balloon says, “My secret ingredient is resentment.” Yep, that’s her. She thought I was overly sensitive and she could not “be with” my feelings, especially anger, sadness, or fear. I knew there must be a better way, which is why I became a child therapist. But when you’ve not had “being with” your child’s feelings modeled for you, it is not easy to do this.

The first thing is to be aware of what’s uncomfortable. For me, it’s fear primarily. My parents hated my insecurity and thus they pushed me unmercifully and shamed me when I was afraid. I stayed afraid.....for a long time. I remember one of my first therapists (yes, I’ve had a few.....therapy has save my life, literally) asking me if I felt anything else but fear. She told me I should try on some other feelings. But I was stuck there....at that time. It seems that when a feeling is denied over and over, we cling to it; just as our children do. It wasn’t until I had true compassion and understanding of my fear that I could be with it in a loving way. And that love had to come from me. I had to embrace my fear, know where it came from and why, and then I could emerge from it.

Therapy definitely helped me do this.....but ultimately it is up to me...and you.

My daughter is insecure. No big surprise there, really. I tried talking her out of it, proving to her how competent she was, shaming her, screaming at her to get over it, and then I finally remembered my self at her age. Then I could be with her in that feeling. I told her how I cried every night when I came home from school saying my homework was too much and too hard. I felt overwhelmed, incompetent, stupid and scared. And this from a late teen/early adult who got straight A’s, met with admiration from teachers, and jealousy from classmates because I ruined the curve. You see, it’s the feeling  that has to be accepted and comforted and loved. When my daughter heard about my insecurity, she softened and our talk deepened. It was hard to listen with all of my heart and soul. 

I had to check my own insecurity of her being insecure.

In an effort to help a parent look at what feeling might be most difficult to “be with”, write down some uncomfortable feelings that you have. Now imagine the kindest, most attuned mother you can, and see how she handles”being with” you and this feeling. Listen to that little girl inside of you who is crying and hurting. What does she need. Imagine her soul mother comforting her, holding her and listening to her.

Going to the Dentist

Going to the dentist

When you have a child with Special Needs going to the dentist can be a nightmare. Again, all their sensitivities make shots of novocain almost impossible to administer because most of these kids are deathly afraid of needles. And then where do you go from there with no numbing? Often a refusal to open their mouth.

Getting braces was excruciating. When they put the gel mold in his mouth for an impression, he gagged and threw up and they had to start over. I tried everything to help him.....breathing with him, telling him jokes to distract him, squeezing his hand, telling him to look at me and we could do this. Finally the third time he managed it. I was drenched in sweat. It was so tempting to yell at him and tell him to “Just do it!!!”....something my mother did to me. I felt like everyone in the packed office was staring at me like I was an ineffectual Mom.

Then came the braces and the hygiene required to maintain them. His Dad brought him for a check up one day and the dentist came into the waiting room and called his Dad out for not enforcing good teeth brushing. The orthodontist threatened to take the braces off next time if his teeth were not better maintained. Purely shaming....for father and child. His Dad never wanted to take him to the dentist again.

When it came time for him to have his wisdom teeth out, I tried to prep him and be there for him. We had to make two attempts. the first ended in him breaking down and saying he just couldn’t do it. The second time I gave him some valium prescribed by the dentist. 

It is such a helpless feeling for a mother to see her child panic stricken and still needing to have the medical procedure done. The wisdom teeth extraction did happened, but a month later the incision reopened for the 4th time and this time a kitchen towel soaked with blood was not stopping the hemorrhaging. I was so done with that dental clinic! I called the best oral surgeon in town in a state of ultimate panic. They got him in in 20 minutes. But then came the directive by this dentist to open my son’s mouth. He refused. He was in a state of trauma and panic. The dentist was a saint, but time was ticking and he had other patients waiting. I used every means of understanding and compassion that I could to get him to open his mouth. I used relaxation techniques. Nope. Wasn’t going to happen. So I had to resort to extreme measures. I told him if he didn’t open his mouth, I would have to take him directly to the hospital because he would die if we did not fix this immediately. That worked, thank God! He got stitched up and healed very nicely. 

I did write a letter of complaint to the first clinic and cc’d it to the American Dental Association. They sent me a check for the cost of the oral surgeon. That helped compensate me financially, but the toll it took on my son emotionally was immeasurable, because as a result, it has been an even bigger ordeal to get him to the dentist now. One time we had to resort to sedation dentistry to fill a few cavities at once. That is extraordinarily expensive and wiped him out for the whole day. Do you know  how many days of work I have missed to deal with dental issues for this child? It doesn’t really matter. Finally, I have found an empathic dentist who specializes in work with Special Needs kids and my son handles the dentist beautifully now. Email if you want his name and number.

Who Am I Other Than Mother?

Seriously? I forgot who I was, other than mother, when my daughter was young. But then again, I had a child with Special Needs and felt that being her mother was the only thing that mattered other than my work as a professional Marriage and Family Therapist specializing in Children and their Families. I think I became a therapist so that I would learn how to do this mothering thing, since my own mother was not someone I wanted to emulate. I came from authoritarian parents who believed in spare the rod and spoil the child, shaming, and “get over it” when it came to upsetting feelings. I knew there must be a better way; and I was going to find it, master it, and implement it.

So it was with the greatest joy that I brought my one and only child, a daughter, in to the world, 26 years ago when I was a 38 year old Mom. Fortunately I made it through her childhood and adolescence and am now on the other side with time to re-discover who I am other than mother, while at the same time enjoying a close relationship with my college student daughter.

Mothers of children with Special Needs are a breed all their own. Wait, first....what do I mean by Special Needs? It is a broad term incorporating children on the Autism Spectrum, adopted children who may or may not have Reactive Attachment Disorder, Downs Syndrome kids, children with chronic illness, kids with extreme acting out behavior, and so on.   While mothers of these children share many of the trials and tribulations of parents with typical children; they have their own kind of agony of isolation, worry about the future, wondering if the child will ever be able to live independently, what will become of them when we parents are gone? And then in the present there is the embarrassment and mortification of their behavior in public, often their lack of friends thus making the parents their only social contact, the learning issues in school, sleep issues, food issues, maintaining good hygiene issues, to mention a few.

And in most families with Special Needs children, the mother is a stay at home Mom orchestrating all the appointments, from OT to Speech therapy, to tutoring, to psychotherapy. And usually figuring out the insurance papers (if they have insurance) falls to the Mom. The Dad is usually working his tail off to pay for all this. The toll it takes on a marriage and on the other children (if there are others) is enormous, as well as the financial drain this puts on the family.

Let me say that I don’t think for one minute that any of us would give up what we have done for our children. They bring us the gifts of patience, compassion for others, humor, a deep love connection, self reflection, courage and the gift of accepting what is.

How do we begin to listen to our own being, our soul, our wants and desires? First by thinking about what we have ignored or neglected in ourselves since becoming a mother. And then by looking at what we want to cultivate in ourselves. In the Mom’s group that I run with my colleague for Mother’s of Children with Special Needs this is what we are hearing. We want to create, paint, act, sing, exercise, gab with friends, have alone time, develop a spiritual practice, meditate, read, write, become more financially independent, see movies, have a Voice, go back to school, and be playful and happy without so much worry. In the coming weeks we are going to explore some of these themes.

Tell me what you have neglected and what you want to cultivate.

Introduction to Moms Soul Sanctuary

I was pulling my hair out. My daughter was 15 and in her room 99% of the time. I could not get her to talk to me, much less do anything with me. And I am a child and adolescent therapist! She ate only pasta, never exercised, called the out-of-doors a “foreign land” and never did any extra curricular activities at school. Yes, she had difficulties, but I was drowning in guilt, depression, and alienation from my friends with typical children. I didn’t know where to turn. Who could possibly understand what I was going through? My parents told me to go to Kaiser for meds....for me!

Then I met my friend Cynthia who has a child with autism and who is adopted from China. We started our own Mom’s group for US....Mom’s who are hurting, and sad, and isolated, racked with guilt about what they did or didn’t do, and Mom’s who needed to talk without being given advice or without being judged.

About 5  years later, Cynthia and I, both licenced therapists, decided to offer a group that could be like a sanctuary for these worn out, depressed, taxed to the max Moms who were suffering alone. What we offer is a place to reflect and share what it is like to raise a child with special needs.....what it is like for the Mom, as well as how it impacts their relationships with any other children they may have, how it impacts their marriages, and how it impacts their social relationships. But mostly it is about the Mom and Her soul, a place for her to reflect and gain some insight into who she is as a person, not just a mother.

I’d like this blog to be about that....the soul of us mothers who raise these children.....our hopes, our fears, our dark places, our light places.

One of our themes comes from Mark Nepo’s Book of Awakening: “Giving voice to what is inner is essential to surviving what is outer.”

Another theme comes from Kristen Neff who wrote a book on Self Compassion. We hold ourselves with compassion and love, no matter what.

A way to get some resources internally for a troubling situation is to do a bit of writing, such as the following.

Describe in writing a safe place for you, real or imagined. Get it as detailed as possible.

Describe a nurturing person, either real or imagined.

Describe a protective figure or animal, real or imagined.

And finally describe a wise/spiritual person....real or imagined.

You can write about these, you can visualize them, you can collage them or paint them. And when you think of your troubling situation, you can use one or many of these resources to help you. Listen to them, observe them, see what they have to offer you