Being the support others need

The post below was originally written in 2010 about finding people who wanted to learn about our approach to working with Jaedon.  I'm recruiting again, and decided to look at some old posts.  These's some good stuff here.  Maybe you can volunteer to be a part of the support structure that a family caring for a child with autism needs.

I started my home program for Jaedon several years ago with one paid college student. She did 10-12 hours in the playroom. I had just had Zachary and had no additional energy to expend getting anyone else. The following year, we got funding to have 20 hours of a special educator with Jay, so I advertised and filled those hours with 4 teachers. That was a good experience, but I found out that having funding isn't necessarily all I thought it would be. There are people who will take the position for the money, pretending to believe as I believe. Still, I had the opportunity to run a 30+ hour program, and did see huge gains in Jay's development.
Fast-forward a few more years and I still have one or at most 2 people volunteering, maybe . I was exhausted from the work of getting the funding for 20 hours and then screening the teachers, I decided not to do that anymore. So, here I was, a vision of a 40 hour program in my head, but feeling like it would never happen, my son would not improve the way he could and it's all my fault. The weight of bearing that responsibility was heavier than I could manage, so I dropped it. I dropped everything. I took a break from trying to get volunteers, from trying to run my program, from trying to help Jaedon, everything. That was my crisis of 2008. Or was it my opportunity?

It was a therapeutic 3 month rest and I recommend it to everyone. I took the opportunity to explore my beliefs about Jay, me, volunteers, life, mission. I let myself completely off the hook, stopped a lot of the self judgement and re-oriented myself in my life. Plus, with no therapists, volunteers, or anyone else coming to my home, I could just be a bum. No waking up in a panic wondering who was coming today and what I needed to do to be ready for them. The kids and I just had fun.

When we resumed our program, I started it again with 2 volunteers, but I felt wonderful, grateful and happy about the program. I was celebrating what we had, instead of constantly bemoaning what we didn't have. I also changed a fundamental belief. The old one was New Yorkers are selfish and don't want to volunteer. That one wasn't useful to me at all. Plus, I am a New Yorker, and I would want to volunteer. I don't think I'm that unique. There are 6 million people in the city. I would like 10. They must be out there. And since I wasn't so desperate for them, I could take my time to think about what strategies would be useful for me.

Two critical beliefs that I have developed are:

•	Volunteering in my program would be an amazing experience for anyone. They get to work with me, get the value of my insight into autism and life. It cannot be compared with what they would learn in school. There is no $$ value that can be put on the worth of this experience. It's priceless!
•	I have learnt so much from Jaedon. He is really the teacher. People in our program get to learn from the master himself. I offer an opportunity for them to grow in the ways I have grown. I'm Jaedon's manager, giving the right students access to his teachings!

These 2 beliefs have helped me think about the whole process of getting volunteers differently (especially in the context of me not feeling so desperate for them).

Acting on these beliefs have gotten me 5 new, excited volunteers who really want to learn about autism from the inside out.  What a difference changing your belief can make!

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…

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