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!!!!!!!!!!!!!!

Pee, spit and poop.

Faith, mom of Jeadon, 11 (at the time)

J has a new fascination with spit.  He collects it in his mouth, filling up his cheeks until he has a natural fish face.  He swishes it around in his mouth, making the most interesting noises.  He often wants to speak, and finding his mouth full, he then hums the words.  Sometimes he even tries to speak.... though it is not much clearer than humming.  Sometimes he starts to giggle and spit comes trickling, or gushing out.

I'm fanatical about smells.

When Jay was about 4 and still not anywhere close to being potty trained, I remember deciding that no matter what, he wouldn't smell.  I am a fastidious changer of pull-ups, an over-user of wipes and all kinds of cleaning agents and essential oils.  I can become discombobulated if I return home after a day away, and there is anything but the smell of childhood coming from J's direction.

Now, the science of pee and poop smell management I have down pat.  Spit now, was totally something else…..

This morning, I woke to the aroma of poop.  Large quantities of it, from the smell of things.  Usually, if Jay did something 'significant' while asleep, he would come and get me as soon as he is awake.  He'll tell me 'Eww!  Wipe!'  Nothing yet, so I waited.  I didn't want to wake up just yet... The pungent aroma was urgent, though....  I got up to investigate.  Jay was still sleeping, wrapped snuggly in his comforter.  I woke him up and began to peel back the covers.  It took a fair amount of fortitude to handle the sight and smells that forced my system out of it's sleepy state.

About an hour later, everything was squeaky clean, with only faint remnants of the various smells.  My son was extremely happy, having relieved himself of the considerable load.  I have to admit that while attending to the situation, I was tempted to think How the ... am I supposed to deal with this for the next .... years??? Potty training has been a moving target for us for several years.  J was somewhat potty trained at 5, had a regression and potty training was one of the many things to go. He was potty trained for peeing at 9, but the downstairs bathroom stopped working and he ... well, he stopped peeing in the toilet, so here we are at 11, wondering…

Do Something

Whooosh... Thwack!

From Faith, Mom of Jaedon, 12 (at that time)

What's that sound? I thought.  It was a dull thud, like a ball falling that doesn't bounce, or a doorstop that has been wrapped in cloth hitting the bottom of the door after being slid across the ground, or...like a window sliding shut. What could that be?  What window is that and who would be opening it?  I looked outside just in time to see Jaedon moving away from the upstairs passage way window.  I can be slow, but I quickly figured out something just sailed through.  It had been raining all day and I was panicking.  Don't do that Jaedon!  Let's keep things in the house.  Don't open the window!

Just then, we receive visitors. so multitasking, I engage them in scintillating conversation while keeping track of Jay's movements with some other..., Excuse me!  I dash off to rescue some item as it is being taken to the window. I usher the guests out and decide to take a look out the window. What if he had been doing this before I noticed?  He could have been populating the narrow crevice between our house and the next for days! This window is about 40 feet above the ground, and is pretty high up the wall. To get a good look out the window, I climb on the radiator and put half my body out the window. My heart sank. I was greeted with a slew of domestic items: a tube of toothpaste, the soap dish, some toys, a few books, the pajamas I had just taken off, 2 pairs of children's sneakers, 2 towels from the rack,.... And here came Jaedon, with another towel in his hand. Nooooo! I yell.  He looks at me with new interest and giggles. Oh boy. If there is anything that's going to get a big reaction, it's this. The lock on the window is broken, and I'm at a loss as to mechanisms for keeping the window shut. A hammer and a nail?

                                                         

The doorbell rings and Jaedon and I go arm in arm to see who it is.  It's our neighbor. The narrow crevice with my pajamas in it half belongs to him. Faith. A hmm... Could you get some shoes on and... Could you come.. I'd like to show you something.  He is obviously uncomfortable. I assure him that I'm aware of the situation but am prioritizing the things yet remaining inside the house. I'll deal with the things already out in due time. I explain the challenge and he offers the idea of jamming the window with a stick. He offered to fetch me an appropriate stick if I measure the window and I hurry off to do just that. In a few minutes, he is back with a hefty slice of wood that would have worked perfectly if I had measured the right part of the window.  I get it to work somehow, and slow Jaedon down enough to that I can at least have a minute to say calmly Let's not put those towels through the window, ok?  I'm finally able to release Jay from the close to vice grip I had on him, in addition to our arms being interlocked.  I finally get to go to the bathroom to handle my business alone.

Perhaps I became too relaxed. Jaedon started checking out the other windows in the house....Sometime later I noticed that my stick was no longer in the window.  From my now familiar perch on top of the radiator, I see the crevice with the obviously offensive stick, some toys and a bottle of lotion.

After Isaiah's blue tooth headset sailed through the bedroom window unto the roof, all the windows in our house have been (temporarily) screwed shut. In lieu of the inoperable windows, Jaedon is now depositing his finds behind the radiators, a more convenient, though no less irritating location.

Floss every night???

Andrea, mom of Lauren, 10

Lauren is often apprehensive.  She is definitely concerned whenever we visit the dentist, although the time before the last, she voluntarily sat in his chair.  The last time, apprehension in full swing, she ran around the office a bit, avoiding the chair.  Eventually, with Dad’s help, we persuaded her to sit in the chair for the examination to begin.

The dentist says, “I see a little build up of tartar here… and here… Are you flossing her teeth?  She needs to have her teeth flossed every night.  It’s very important.   …. (and on and on….) I floss my children’s teeth every night….”

I finally interject, “But Dr. S, your children don’t have autism.  I’m just happy I get to brush her teeth at all!”  He persisted with the discussion on flossing, trying to impress the urgency of the situation on me.  Maybe this was like the straw that broke the camel’s back.   I abruptly walked out of his office and started to cry.  Doesn’t he understand?  How can he compare what he can do with his typical children to my child and my efforts?  Just getting to the dentist is a major accomplishment, not to mention flossing!

Be a neighbor

This week, were you a .....?

Headphones

J, mom of K, 16

"We're over here... look for the tall boy with the big headphones..."  This was the description I laughingly gave to my friend as we tried to re-find one another at an amusement park where we'd gotten temporarily separated.  I have a sense of humor.  So, while the hoards of people bumping past stared at my teenage son with his enormous noise-cancelling headphones avoiding my direct eye contact, I made the decision to be light hearted and to imagine the situation from my son's point of view.  I have a wild imagination, and I'm quite sure that with his autism, he honestly doesn't notice them.  Or care. 

But think for a moment that he does care.  His thoughts might go like this:
"Look at those odd people with no headphones.  They must be miserable.  Don't they realize their ears are exposed?  Their eardrums are exposed to all this chaotic noise.  How can they stand it?  Poor things....walking around like that.  I should try not to stare."

An Everyday Moment

God, and the devil, both in the details.  In so many ways, it's the small things that matter.  Actually, the small things are very large things and can mean the difference between life and death.  Like a little bit od poison, a small thing, consistently applied, can go a far way to undermining the value of the big ideas we want to live by.  In just the same way, a small thing, consistenly applied, can go a far way to adding value and energy to a big idea.

So it is in our lives as parents of kids with special needs.  It only takes Johnny refusing to wear his pullups all day everyday to radically change a parent's treatment philosophy about autism. It only takes a messy home everyday to create painful arguments between family members.  It only takes a week of sleep deprivation to alter relationships between parents and their children.

It only takes a moment of listening, of stopping, of loving, of being with someonhe who is on the brink of the verge of despair to help them NOT to take the plunge.  It all happens in the every day moments.

How can you bring the sacred into someone's moment today?