Stop it!

Faith, mom of J, 12.5

I saw J scratching himself with his fingernails today and I had a really big negative reaction. If there is anything I would give him drugs to stop, it’s him hurting himself. (I don't even give Tylenol).  J hasn’t done this before, and I felt floored. He has always liked being scratched, but now, he is scratching to the point of giving himself welts, and bruises, and I feel panicked. The world keeps spinning out of control. As soon as I gather in one thread, 4 more unravel.

I almost yelled at him “Stop it!” and he looked very irritated, upset even, and went back to scratching his arm. As I continued to forcefully tell him not to do it, he pushed me away, quite forcefully. He screamed, and ran upstairs, but not before jumping and stomping, with screaming a little. I heard him upstairs crying. He’s not usually that quick to fly off, and doesn’t stay upset, and he doesn’t push back. Sigh. So he was really feeding off my angst. I was very panicked. I remember seeing bruises on his legs a few days ago, and wondering what they were. Now that I see fresh one on his legs, I know for sure what they are.

When he came back downstairs, somewhat recovered, I offered to change his pull-up. As I helped him in the bathroom, I had another mini crisis, or perhaps, a continuation of the current one. “God, can he be potty trained, please?” I have changed J now for 12 .5 years. Isn’t that enough? Must I have that, being on 24 hour alert for all kinds of thing, like failing to prevent a quart of extra virgin olive oil from being poured into the sink, or the new bottle of pure liquid castile soap that went into the bathroom sink? Not to mention the food I’m constantly protecting, telling him not to strip the paint off the wall, and the call from DH on the cell phone seconds after he left for the supermarket telling me J was outside... Must I add preventing him from scratching himself to that list of 24/7 vigilance? I’m ready to trade something. I’m putting changing diapers back on the shelf, if I have to take protecting from scratches.

Christmas every day

Andrea, mom of Lauren, 10

Brrrrr… Brrrrr….Brrrr. It is Saturday morning and Daddy is up bright and early mowing the lawn. Lauren dashes to me terrified. “Lawnmower! Lawnmower!” she screams with a frightened look on her little face and her ears corked with her fingers. She then buries her head in bed with her beloved stuffed toys waiting for this ordeal to be over while I try to reassure her that this too shall pass. Meanwhile Jodi and Daniel are sleeping through all of this, oblivious to the turmoil taking place.

Lauren has always been scared of certain motorized noises since early childhood. At the top of her list is lawnmowers, followed by blenders and juicers. This oversensitivity to certain loud sounds is not unique to our dear Lauren but is fairly prevalent amongst children with autism, who have difficulty processing sensory information.  When Lauren was younger, Daddy and I tried to use the blender and juicer very late at nights when we thought she was in a very deep sleep. It worked….sometimes. Now we take the desensitization approach, hoping that frequent exposure will help her to overcome her fears. She is getting better and we press on.

Loud motorized sounds may be scary to Lauren but not loud music. She LOVES music and the louder the better. Daddy, Jodi, Daniel and I are frequently awakened from our beds at 5 am on weekends with the melodies of Christmas from the Bronx Bethany Choir’s “Hope of Christmas” CD. She is the choir’s biggest fan. Christmas is the most favorite time of year for Lauren with music, lights and toys. Since we got the CD in December, everyday at our home is Christmas. Lauren and all our family have listened to the CD over 200 times or more.  Repetitiveness and rigidity with routines are other features that Lauren and many others with autism share.

As Lauren listens to her music, she often lines up her numerous stuffed toys. We have stopped counting them now but we think there may be close to 100 or more and she knows each one by name. Her stuffed toys are her “everybody”. Although many autistic children engage in the stereotypic activity of lining up toys, Lauren has taught us that what seemed to us as an initially purposeless activity was actually one with depth and meaning, full of imagination and pretend play that are often lacking in autism. She told us that her “everybody”, the stuffed toys, are the choir members. Sometimes, she is the conductor, sometimes a singer and sometimes the organist…and yes, sometimes we line up beside the toys and join her choir much to her delight.

This is a glimpse into our normal life with Lauren….one with routines that are difficult to break, one with stuffed toys all over the house, one with loud music blasting most of the time, one with second thoughts about using the lawnmower, blender or juicer just now. But one that continues to teach our family daily of love, compassion, patience, joy in service and fun in the midst of seeming chaos. 

Shawn Stockman's son

Just another family story.  Wealth doesn't protect you from autism, but according to Shawn, it helps you take some of the critical steps.

Both boys??

A, Mom of M, 10, N, 8

When M was born, he weighed 10lbs. 6ozs. I thought he was the ugliest baby I have ever seen. It took two Doctors and Two Nurses to bring him into this world. He as so huge, put him beside a normal sized baby oh my, gigantic. He looked like a two month old. Any way I loved my mini giant. We thought he was also the most miserable baby, cried for nothing and when he started could not, would not stop. Anyway life continued with my now six year old and my mini giant, M. Eight months later, I was pregnant. Now I look & feel like crap, looking after a six year old and my mini giant. Getting more tired.

Nine months later the most beautiful, angel was born, N, he was gorgeous at 8lbs. 8ozs. He was perfect. No problems, he hardly cried, he was just my angel, and the name stuck. They both went through the normal stages, teething, playing, smiling, we were a happy family.  M continued to be a pain. He was the most horrible terrible two year old.  My now 8 year old and my angel, were perfect, just a joy. Then one day. M had his first temper tantrum, never seen anything like it, he started to become withdrawn, no more saying Mommy, no more looking at me, strange I thought. But life went on for a few months, then I really got concerned, took him to the Doctor, Two Pediatrician, one a Developmental Pediatrician. Did some tests and at 3 years old the dreaded diagnosis of……..Autism. ‘I screamed, and cried No way!!!!’ ‘The Doctor said I am sorry’. While in the Doctor’s office feeling like I was hit in the face. I causally said to him, my two year old (my angel) rocks back and forth.  Doctor replied, ‘Oh, Oh, better get him in here’.

Two months later I took N in to the Doctor. Here it comes….. ‘So sorry, he too has Autism’. ‘I said no, no Doc, he looks me in the eyes, smiles at me, plays with me, no, no. I wailed, not my angel too’. I left the Doctor’s office a confused and depressed woman. My husband was beside himself.  My whole family was in shock. I remained in shock for one and half years, did not sleep for one and half years.  Life was hell.  My husband and I cried together. Then we stopped. We accepted it. Love them for who they are.

I started to read everything on Autism. I got help from different agencies. I employed a worker to help me out. It helped. But not enough, so while they were on several wait lists for treatments. I went to seminars, tried to meet other parents with kids like mine. Then I came to the realization.  I’m good at this. I could calm them when they got agitated, anxious, strange behaviors etc. My nemesis, I cannot for the life of me potty train them.  M (now 10 years old), almost there, pee no problem, Poo? Oh boy :-{   N (now 8 years old), still wears a diaper. Help!!!!!!!!!!!!!!