So, I really apologize for being MIA the last few weeks. I have been in a FUNK, a really big crippling FUNK, one that has been almost impossible to come out of. And I haven't felt so awful in a very long time. I told my husband I am having a mid-life crisis, one without the love affair or need for a fancy car. I am not unhappy or dissatisfied with life whatsoever, but just stressed to the MAX. And as my birthday was approaching, I had that familiar fear "I will someday die and leave my profoundly autistic child motherless" feeling again.  I am not proud of these feelings. The fear is so bad at times I am unable to even pray...and I hate this most of all.

My brother says I am obsessed with this fear of dying, and sometimes he is right. True, I drive my family nuts with my irrational thoughts and it's hard to break away from them sometimes.  I am thankful my birthday has passed and the weather is somewhat stabilizing, here in New York.

This new preoccupation all started when my neighbor, aged 44 years, died of a heart-attack in front of his wife and young children, back in February. The dear man has no symptoms and no previous condition that was known. He leaves behind a heartbroken spouse and two beautiful kids. This has affected me more than I can say. This ill-fated event was the start of the cascade of individuals in our town who unexpectedly died and left their precious families behind. All of them were tragically under the age of 50.  How can this be happening so often lately?

In the last 9 months I have been to a breast specialist twice (my mother is a breast cancer survivor and I'm really good at freaking myself out) and a very knowledgeable holistic practitioner who put me on a gluten free/corn free/casein free diet to perhaps help alleviate this terrible anxiety. I have lost a few pounds and feel really well and take various supplements. I walk several miles a day and I hope I will be able to keep it up once the kids are out of school. More importantly, I try to focus on the spiritual/emotional end of all of this and have been back to my fervent prayer life, which I have missed immensely. In an attempt to reason with myself, I acknowledge these fears and nurture my person whenever possible.

When you have a special-needs child you fear getting older and losing control.  It's not the wrinkles that may come, it's not the graying hair  (shockingly, I don't have MUCH YET!), and it's not the birthday number in and of itself that sparks the worry.  The reality of just being human and eventually leaving the planet is a scary thought, especially when young and seemingly healthy individuals are dying in their 30s and 40s right before your eyes.  I do not remember my parents living with this fear, but maybe they had it too, and I just did not comprehend their worry at that time.

Maybe, for us, it's the constant sleepless nights (our autistic son has always had sleep issues), and perhaps our adrenal glands are FRIED as a result of all the stress and lack of rest, I do not know.  But I am trying to have FAITH, trying to remain POSITIVE and OPTIMISTIC that God in His mercy will continue to help us as we experience this big adventure He has laid before us. This exhausting beautiful life with our son and his Autism...one I wouldn't trade for all the world. So, for now, I am back in the saddle, and I hope I will continue on this road for a long time as devotedly possible as I can be.  Hopefully I can continue writing and Jack can be proud of me.

May You Always Recognize The Blessings

Siblings Are Autism Victims Too

When my middle son Joe was nine months old his first word was, "Jack." He said it lovingly, with eyes beaming, and drooly fingers pointing to his older brother, who is six years older and autistic.  For the longest time, Jack was Joe's favorite person, and Jack tolerated him the best he knew how.

I remember clearly one incident where Jack mustered up all his strength and picked up Joe in his walker, and moved him to the other side of the kitchen, just to escape him. Other times Jack ran and got Joe's pacifier and shoved it into his mouth, as to reduce the noise baby brothers create.  But Joe was persistent. To him, Jack was Jack, and he loved his big brother dearly, without any reserve or noticeable resentment that Jack was "different."

Joe was probably two and a half when he started asking questions about his older sibling. He was in the bathtub after a busy day, and he asked me why Jack didn't speak or play with him. It took all I had in me at that moment to explain to him that Jack's brain worked a little bit differently and that Jack was handicapped.  In time Joe had a bunch of very appropriate questions:

"Was Jack born this way?"
 "Did God make Jack?"
"Will he always be autistic?"
"What happened to him? Will it happen to me too?"

Over the years I did my best to answer him. But the one inquiry that hurt me that most was: "Will Jack ever want me?" I took a deep breath and hoped I could make him understand that although Jack had autism, he still loved us very much, even if he was quiet and distant.  I told him that God had given him a very special role because in many ways he would be the "Big Brother" that Jack did not have. Joe fell silent for a moment and then looked at me with large sleepy eyes: "Don't worry, Mommy. I promise I will take care of Jack." And I felt like my heart was ripped out my chest.

In time, I saw Joe keep his promise. He held Jack's hand in parking lots and assisted him at birthday parties. He introduced Jack to his friends and spoke for him when he didn't have the language to express a need. In some ways, Joe was Jack's hero, and, to this day, they have a special bond.

Our youngest son, Gerry Michael, was not as easily accepted by Jack. A noisy toddler and preschooler, Jack did not take to him readily. I cannot say they are close at the present time, and I do not know if they will ever be.  Easily startled by Gerry's tantrums, Jack can still run away screaming, with his hands over his ears. They currently have little to do with each other, but that might be an age difference thing, in addition to the communication challenges.

Jack has received much of our attention due to appointments, lifestyle, therapies, and special accommodations. It has often concerned me that his two younger brothers might one day be resentful of all the time and commitment given to their special needs sibling. I see some people shunning my two younger children because of their older brother and it hurts me deeply.

Which is the larger point. Autism isn’t just a health crisis; it’s a family devastation that impacts all members. Sometimes the impact on siblings can be positive as many learn compassion and enter helping professions later on.  My little ones are learning some hard lessons very early in life and display maturity beyond their years. My husband and I do our best to give each child what they need and encourage all three boys to embrace and share their talents. We try to spend quality time with each of them on a regular basis. But it's tough some days, its' really tough, not knowing what the future will bring. Until we recognize autism’s immense effects and attend to the special needs of the whole family, we will not really be dealing with the far-reaching but deeply felt impact of this disorder.

"Will Jack ever want you? I said to Joe one day. "He DOES want you. He will always want you. I am sure of it...and I am always here for you."

"I know, Mom," he answered with a smile..."You are the best mom there is...I am sure of it also..."

May You Always Recognize The Blessings...