Tot Basketball or Torture?

I had quite the learning curve when it came to sensory issues and my child. I’d hear from all directions that if you have autism, you need occupational therapy (OT). I’ll have to admit, I didn’t focus on it right away. I thought an Occupational Therapist was someone who helps you get a job. It wasn’t until I took Alex to his first Tot Basketball game through the Lodi Recreation Department that I saw the light.

To my defense, I had good intentions. I mean, don’t all little guys do sports? Isn’t this a way to integrate him into the normal world? Wasn’t this going to help us feel like normal parents?

Well, the poor kid was miserable. The pounding echo of the balls bouncing, the whistles blowing and the parents cheering was enough to send me home with a pounding headache, so I could only imagine what Alex was experiencing. His hands were stuck so tightly to his ears you’d need a crow bar to pry them off.

I have to commend the coaches and others who were involved with helping at the game. All were very kind and were trying as hard as they could to include Alex in the game and make him more comfortable. Being a nervous wreck, I appreciated the warmth more than they know.

Needless to say, we quit. The sensory obstacles were too great. I apologized profusely to my very understanding little one and promised I wouldn’t subject him to anything like that again (intentionally that is).

For information on how you can receive OT services, contact your Program Specialist to request an evaluation of your child.

Autistic Toddler Kicked Off Airplane

ABC Eyewitness News reported today that an American Eagle flight taxiing to a Raleigh-Durham Airport runway was turned around and a mother and her two-and-a-half year old boy with autism where kicked off. (For the full story, go to: http://abclocal.go.com/wtvd/story?section=news/local&id=6223045)

Apparently the boy was having a meltdown that was aggravated further by the flight attendant’s indignant behavior. I felt so bad for the mother when I read that she was trying to do everything she could to calm her boy down.

"If they just would have been a little more understanding I think that none of this would have been a problem," the mother said. She also stated that the flight attendant was coming by, tightening the child’s belt, reprimanding him and yelling at him. To top it off, regulations demand that the Mother stow her bag, which had all of her tools to calm the boy, in the overhead.

Everything just kept escalating and the pilot came over to her with a stern warning. Mom ended up breaking down after the pilot returned to the cockpit and announced that the plane was being turned around because “there was a woman and her child on the plane and the child is uncontrollable.”

I could just picture myself in the situation: everyone staring at me as if I were the enemy, the bad parent of this unruly child. I would be pleading inside for them to trust that I know my son and I will calm him down (eventually). Just give me a little empathy, a little compassion and a little time and you’ll find a calmer Mother as well as child. And for goodness sake, don’t take my bag of tricks away!

I’ll admit it was probably no picnic for the other passengers who felt they were doomed to spend a flight with a screaming child. I understand it’s no picnic being with a child who’s yelling, not listening and rolling in the aisles.

A child with autism is experiencing the world differently. His senses are magnified and anxiety levels are high, especially on an airplane where people are yelling at him and his Mom is getting increasingly stressed out (go figure). There is so much our little ones have to deal with and appearances can be deceiving.

My prayer is that there can be more understanding, open hearts and less judgment towards the parents and children who are honestly doing the best they know how.

We have the benefit of a Behavior Specialist through the VMRC who periodically comes to our home to help us with our son’s challenging behaviors and struggles. We had to attend a two-day parenting seminar (which was very helpful) to obtain his services. Give your Regional Center representative a call for more information on how to obtain this kind of help for your child.

Our Cycle of Emotions

I went to a rather mind opening workshop last week presented by the Family Resource Network in Stockton. Based largely on the research of Ken Moses, Ph.D., we were taken through the journey of emotions experienced by families raising special needs children.

Turns out we’re grieving. To me, hearing that my neurotic behavior over the past two years is normal was quite refreshing.

I’ve heard about the stages of grief before: denial, anxiety, fear, depression, guilt (my all time favorite), anger, isolation and finally acceptance. What was enlightening for me is the notion that going through these stages is not only normal but necessary to emerge a stronger parent.

In a short video clip from his parent support group, Dr. Moses asks the group, “Think back to when you were anticipating the birth of your child. Who or what was the child to have been for you?” I’ll have to admit, many of us in the seminar welled up after contemplating that one. The question hits us at the core. Our child’s disability impairs our heart-felt yearnings and rattles our sense of being. We grieve the loss deeply.

We become drained and fearful of the challenges ahead and the internal changes we are forced to make. We must raise the child we have while letting go of the child we dreamed of.

Denial is used to buy us the time needed to blunt the initial impact of our shattered dream. It holds back the inevitable long enough for us to discover the inner strength needed to confront what has happened.

Anxiety is the inner source of the need to act. Before long, we come to the terrorizing realization that we, not some professional, are our child’s medical, education and therapy managers, even though we may have minimal knowledge of these areas. The monumental task is overwhelming.

We are guilty about the cause, about our genes, about our anger, about our various beliefs surrounding why this terrible thing has happened. Dr. Moses said, “Guilt is a feeling state that has become so identified with being neurotic that people feel guilty about feeling guilty.” He claims, “The guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything.”

We become depressed as the waves of despair and anguish wash over us and there is sometimes uncontrollable sobbing. We are unable to imagine that things will ever get better – we’re hopeless. A picture of Glenn Close curled up in a corner flicking on and off the light in Fatal Attraction comes to mind. When we are confronted with a disabled child, what used to make us feel like competent and capable parents gets challenged in the darkest of ways. We no longer can define ourselves by how we measure up to parents of typically developing children. Our goals for our children and our standards for ourselves are forced to change.

We are angry at the harm done to our child and the shattering of our dreams. We are angry that our internal sense of justice has been violated. “What, after all, is fair if this can happen?” Dr. Moses even raises the awareness that we can be angry toward our child for putting us in this position. Then, of course, we feel guilty for our unreasonableness because we know it wasn’t the child’s fault.

We can be so embarrassed and judged by our child’s behavior that we isolate ourselves to escape the pain. Some of us are devastated by the looks of annoyance and by family members, teachers and friends who don’t understand. They imply that our lack of good parenting has caused the outbursts, our special diets are weird, our inability to control our child at the table is unthinkable and we hide in the safety of our homes.

Lastly there is acceptance. We acknowledge the loss and the feelings of the loss. We still go through the cycle of emotions, but they don’t rattle us the way they used to. We bounce back sooner. We live with the struggle and grow from it.

The good news is that we are normal and are growing into stronger more competent and empathetic people through our trial. We are being refined by fire. We are stronger in our faith, stronger in our love, in our commitment and we are overcoming.

There is much joy in raising a child with autism. I revel in Alex’s accomplishments: when he looks into my eyes and gazes longer than expected, when his words turn into phrases that make sense, when I make it through Target without wanting to lose him in the toy section, when his teacher says, “He had a good day today” and especially when I hear the longed for words “I love you”.

To find out more about how the Family Resource Network can support you, go to www.frcn.org or phone 209-472-3674 or 1-800-847-3030.

How Do You Solve a Problem Like Alex?

I’m getting a bit annoyed at the fact that Alex won’t listen when I read to him. He’ll hum the entire “Sound of Music” soundtrack under his breath and line up dominos instead. This failure to focus has gone on long enough! I decided to fight back. I sat down right next to him, opened up the book and kept right on reading no matter what he was doing. He sang louder, “The hills are alive…”, I plugged my ears and kept right on reading. “Doe, a deer, a female deer” he crooned. I kept on reading. “So LONG, FAREWELL, AUF WIEDERSEHEN, GOOD-BYE” – boy, he’s a tough nut to crack. I kept right on reading.

Wouldn’t you know it? He stopped. He sat by me. He listened to the last page. I stayed calm which was a miracle and said “goodnight”. As I began to leave the room I heard, “Mommy wait…give me a kiss!” Ah, the sweet smell of victory!