When is your Special Needs Child an Adult?

When your Special Needs Child Becomes an Adult

Exactly when does your Special Needs Child become an adult? 18? 21? 26? 30? When s/he moves out of your home? And when is it that your adult child moves out to live elsewhere? When s/he goes to college? When s/he stops being financially dependent on you? And when do you stop financially supporting your adult child? When do you”trust” that your adult child can handle life on his/her own.....the money, the paying bills on time, the problem solving that is required by the complexity of life, his/her nutrition, his/her health issues, knowing when someone is trying to take advantage of him/her, dealing with drugs and alcohol responsibly, dealing with roommates, and on and on.(I am going to use the term “child” here, even though the age is 18 on up, because the person is still a child of the parents).

There are no models for this. There are no classes to teach life skills on an as needed basis. It seems that the stakes are so much higher when s/he is not under our own roof. And yet, isn’t the goal of parenthood to let our children go; to fly....or not.  And don’t all children have their setbacks?

 I wish I had the answer to these questions. Unfortunately, they have to be answered and discussed on an individual basis, child by child and family by family. I would love for others to share their stories about dealing with this issue.

We know that our children develop on a different time line than typical children. In my experience in my practice, I see parents who expect way more than the “child” can actually manage, thereby creating a great deal of anger, judgement and shame in the “child”. Ruptures in the relationship easily happen at this point. This time period of early adulthood is not an easy road to navigate because our children need support and encouragement from us, yet at the same time they may still need to be financially dependent on us. The double standard, if you will, is that parents of typical children frequently pay for their child to go to college for 4-6 years; or the child gets student loans and still the child is supported in many ways financially by the parents. Our Children with Special Needs often are not ready to go to college at 18 or 19,  and they certainly don’t get any loans or services to help support them (unless they qualify for SSI...which helps). Still they aren’t ready to support themselves financially. But they are ready for emotional and psychological independence from their parents and ready to not be living at home. They ARE ready for individuation, the need to find out who they are apart from their parents. This is such an important step in their development of navigating the adult world. Will they make mistakes? You betcha! Will they fail at some tasks? Of course! But how else will they learn? If they stay under the roof of their parents, there will definitely be rebellion and anger on their part. Parents will feel angry and resentful, unappreciated and exhausted. The process of individuating can be excruciating.....complete with saying horrible things to each other, and even physical fighting. Supporting these children financially for a while is not necessarily indulging them. It will be a process until they can go to school to learn a skill, go to college to get a job, or be able to find a job on their own. But this may not happen in a timely manner, not on the cultural timeline for when independence is supposed to occur. There are no models for how to navigate this important life stage with CHildren who have Special Needs. Individuation is different than independence. Both are goals for our children. But they do not necessarily come at the same time. What a balancing act this requires for parents!

Shame

Shame

Shame is a little talked about/explored topic. Makes sense, doesn’t it?  The very fact that we feel shame about something makes it feel shameful to talk about. Therein lies the paradox. Did you know that neuroscience has enlightened us to the fact that when we are in shame, our frontal lobes shut down. Our frontal lobes are where our executive thinking takes place. When that is shut down, we literally cannot think straight, let alone think rationally. Shame cuts off connection. We suffer alone when we are in shame. 

What is shame and what causes shame?  I’ll summarize the wikipedia definition. The word shame is thought to come from an older word meaning “to cover”; such as covering oneself literally or figuratively. Darwin described shame as blushing, confusion of mind, downward cast eyes, slack posture, and lowered head. Shame can occur in any situation of embarrassment, dishonor, disgrace, inadequacy, humiliation or chagrin. It can also be used as a verb, to shame someone; which is to assign or communicate a state of shame to another.

My first conscious memory of shame was my mother standing over my 2 or 3 year old sister on the floor in the kitchen. My sister had just wet her pants and was cowering on the floor covering her head. And my mother was using the universal sign for shame pointing her forefinger and using the other forefinger to brush it downwards while saying to her, “Shame on you. Shame, shame on you!” I was frozen in fear and abject helplessness. Even though I was only 5 or 6, I knew this was wrong. My poor sister.

I bring up this topic of shame because so many of us with Special Needs children feel shame, as well as shamed in our naive, uninformed, hurtful culture. And our children feel shame almost daily from their peers, and even uninformed teachers. In addition, in an effort to try to “teach” our children something, we sometimes shame them. It never helps. Let me repeat that: it NEVER helps. Shaming cuts off connection, damages relationships, and eclipses learning. When the thinking function is shut down, nothing can be learned.

Another complication of shame with our children is that they don’t want to tell us about it.  A client told his Mom that he didn’t like PE class. And then said that the children tease and mock him and the teacher never sees it and so does nothing. It was so hard for this child to tell his Mom and it only came out when the child was refusing to go to PE anymore. We probably don’t know the half of what shaming happens to our children. And some of it is so insidious like filling a child’s hat with sand and putting it on his head; and then claiming it was a joke. Or a best friend pushing her friend’s face into her birthday cake at school and everyone laughs so the teacher sees nothing wrong with that. The teachers are so ill trained to spot bullying and deal with it. They unwittingly allow that behavior to go on everyday at recess and lunch.

In our Mom’s group we gave examples of when we have felt shame or when we have shamed our children. The most common that we experienced were about body image and criticism of our parenting. My father, a physician, had the uncanny ability to guess anyone’s weight and be within a pound or two. If I gained a bit of weight he would point it out to me in the morning before school.... “Gaining a bit, Judy?” And my mother thought I was too thin as an adult. The last time I saw her alive, I walked in to her hospital room and the first thing she said to me derisively  was, “what’s that? a size 2?”

Couldn’t win in my family. No wonder I became a therapist. There had to be a better way!

 Some also realized that their method of teaching their children about body hygiene, proper dietary intake and/or being more physically active was actually shaming. And we all realized it changed nothing. 

What is the antidote to shaming? Connection; reaching out to someone you trust; telling your shameful story exposing it to the light of day; and empathy. At the end of this post I will give you two links teaching about empathy and Brene Brown talking to Oprah about Shame. 

Some of us realized that our shaming of our children was about unresolved issues for us. For example, cleanliness and neatness can often be an issue for parents of children on the Spectrum. One parent realized that she was shamed for not having a clean room and in her home cleanliness was next to godliness. It was viewed as respectful and necessary to be successful. That may not be true for our creative children who think outside the box and like their things just where they are....not put away.

We shame our children for playing too many video games, for eating only pasta, for living in a fantasy world, for not having any friends, to mention a few. Not that we mean to do this. But we have to be careful of our language and respect their limitations. For with those limitations, also come real gifts that they will not treasure if they receive too much criticism. John Gottman says it takes 7 compliments to compensate for 1 criticism. Shaming and criticism are deafening and defeating to a child, especially when it comes from us.

Now about our own shame. We need to learn to talk to ourselves as we would a best friend. We need to love ourselves and heal the places in us that have been damaged by shame. Our group helps with that because of our understanding and trust with each other as we speak about unspeakable things. I hope you will learn the language of self compassion and empathy. And realize the awesome person that you are. Here are the links......

https://www.youtube.com/watch?v=1Evwgu369Jw Empathy

http://www.oprah.com/oprahs-lifeclass/Brene-Brown-on-the-3-Things-You-Can-Do-to-Stop-a-Shame-Spiral-Video 

Humor……Chuckle for the Day

Humor....Chuckle for the Day

I hear so many heart breaking stories in my work and somehow by the Grace of God I have found a way to hold them with compassion and love. I can “be with” people/children in distress, sadness, despair, hopelessness, shame, and most of the other difficult feelings that bring people to therapy. I think I was born a highly sensitive being and the mis-attunement of my mother made me exquisitely attuned to others’ suffering. I learned the experience of suffering at my mother’s knee. And I made it my life’s work to hold people in their darkest moments. For a long time, I didn’t think I “deserved” to be happy when others were in such pain. But gradually, I learned to compartmentalize and as my heart and soul healed in therapy, I began to experience fun and joy and laughter. Having my daughter brought me the greatest joy and she taught me to laugh and see the light side of irony.

I also have been privy to some hysterically funny moments, experiences, sayings and expressions......a la Art Linkletter, “Kids say the darndest things.” It’s true! They do!

So I thought for a little levity in whatever stress you are feeling today, I would share with you some funny stories to give you a “chuckle for the day.” I apologize for some of the foul language/swear words, but these are verbatim.

We were at the dentist for the first time. She was 4. The dentist was counting her teeth and she relaxed because she loved numbers. The dentist asked her how old she was. She said, ”I’m four and three quarters and I can’t wait until I’m five and a dime.” The dentist looked up at me, and we smiled, trying to hide our hysterical laughter.

A child passed gas in my office. Age 4. She looked embarrassed and said she was sorry. I told her everyone does that, no worries. She said, “Yes, it’s the gas of life.”

A boy aged three came into his mother’s bed in the morning. He kissed her and told her she had “stinky wind”. She told him it was called, “morning breath”. He said,” Hmmm, you have morning breath and I have morning penis”.....having erections in the morning was a bit troubling and uncomfortable for him.

Children on the Spectrum are very literal. A precocious 3 year old child went into the bank at Christmas time with his mother and noticed a star on the top. He said, “Oh I get it. Some people have human shapes on their trees (i.e. angels) and others have geometric shapes (stars).

Fathers and Step Fathers sometimes think mothers coddle their Special Needs child. 

In this family, the mother cooked pasta for her son every night, as that was basically all that he ate for dinner. One night, she could not be home and asked the step father to cook pasta for her son. He did. However, he let some of the pasta hang out over the edge and he singed the edges. Burned pasta. When Mama came home she saw the boy sitting with a heaped up pile of pasta in front of him untouched. What happened??  “The Bald Bastard can’t cook!” he exclaimed. When Mom asked step-father what happened, he replied that he thought a little burned pasta would not hurt him and that Mama spoiled the boy. He was not going to cater to her. Hmmmm.

One night a Mom and Dad of 4 children got dressed up to go out on a date. The 6 year old commented, “You guys look really good. You look like you don’t even have children!”

A Mom and 4 year old son were in the car with Grand Dad (Mom’s Dad). It was Christmas in a busy mall parking lot. Grand Dad was waiting to pull into a parking space on the left, but before he knew it, somebody coming from the other direction whipped right into the space. Grand Dad said, “ Well look at that guy. He pulled right in front of me. I hate when that happens!” The boy piped up from the back seat, “Know what my my Dad says when that happens to him?” Uh oh. Mom was cringing. What was he going to say? In the exact intonation of his father he said, “Biiiiiiitch!”

A girl on the spectrum ordered a toy from a cereal box and knew it was going to be shipped to her. When she came home and her Mom presented it to her, she said,”Oh, I missed the ship? I wanted to see it come to the front door.”

Do you have any funny stories or anecdotes from your precious ones that you’d like to share?

Understanding

Understanding

I believe that all behavior makes sense if we can understand it. But understanding is really difficult when it comes to a child with Special Needs, especially if the Special Need(s) has/have not been identified yet.

Take, for example, the 2 year old who kept squeezing the other kids in Gymboree until they screamed with horror and fright. Why would a two year old do that?  No matter how the child was reprimanded, shown another way to connect, and overly supervised, it kept happening. Other parents were beginning to stay away from the Mom and child. Other children seemed frightened and avoided the child. What could be going on?

The Mother was worried and confused about her child. Maybe she shouldn’t take him out in public? Or maybe it was the other children not accepting this boy’s overture of a zealous hug?

And then there was the child who bit in preschool. This happened again and again, no matter what the teachers or parents said to the child. And then they realised the child was an only child and overwhemed trying to navigate social give and take. Finally, they told the child to yell, “help” when the child felt overwhelmed and the teachers responded immediately to help facilitate the difficulty. The child never bit again.

But initially, the parent was humiliated and embarrassed. Where do you turn? 

There’s a great book called The Out of Sync Child which helps parents and professionals understand sensory integration difficulties.

 And children on the Spectrum have very sensitive sensory systems...you know the 5 senses of touch, hearing, smell, vision, and taste?

Like the middle schooler who would run to the bathroom to vomit because the smell of the lunch room nauseated her.....every day. 

Like the child who could not stand to be at the Mall because of the overwhelm of the lights and noise and amount of people. 

Like the child who needed ear plugs to go to the movie theater because it was too loud. Like the child who would gag when “forced” to eat meat or even alfredo sauce on pasta, or tomatoes.

Like the child who could not stand the feel of the rib of the toe on her socks, and would rip them off as soon as they were put on by Mom.

Like the inability to ride a bike until age 9 or 10 because of the visual spatial difficulties with sensory issues.

I could name a hundred more; but hopefully you get the gist of this.

At first when this happens, we have some patience and then gradually get more and more annoyed, if we do not understand that this is not willful behavior, rather neurophysiology. But most of us were raised with impatience and an attitude of “just do it”. 

Sports was big in my family. One of my father’s goals with me was to teach me to throw a ball.....NOT like a girl. And by gosh, he succeeded. I was a first base person on our school’s softball team, and I learned to throw and catch a football pretty well. I was athletic and I loved playing sports with my Dad. He didn’t care that his first two children were girls...he taught us to play baseball and football and I must say he was very disappointed when I became a cheerleader instead of going out for girl’s basketball.

Before I had children I worked with a boy whose parents were really supportive of him playing soccer. The boy resisted, was found climbing the net in the goal area during the first practice, and was off picking daisies in the field for the rest of the time. When I asked this child what was going on, he said, “How would you like it if you knew that 16 arms and legs were coming straight at you and that they could kick a ball into your head or your stomach which would knock the wind out of you? And you would feel like you are going to die?” OOUUUUH.....now that made sense to me. He was on sensory overload and could not manage his fear of being hurt. That was pure panic to him. And pain seemed like death to him. This was his experience....not an over exaggeration.

He needed understanding and acceptance of how he viewed and experienced his world.....not dismissive disdain.  This is hard to do if you have had no experience with children being that sensitive, frightened, overwhelmed and daunted. 

So in our effort to not ‘baby” our kids, sometimes we are overly dismissive of their self experience. This can be in the form of shame and criticism which can get embedded in to their psyches.

We need to look at why our child’s difficulty is so triggering for us....to help us understand both what is going on with us, so we can set it aside; and what is going on with our child in order for us to truly “be with” our child in their own self experience. When  we can do that with empathy and compassion, as well as understanding, we will better be able to help our children organize their feelings and accept themselves for who they are as well as who they are not.