Thursday, January 26, 2012

Talking to Autistics

I talked with my son, Jake, on the phone last night. He lives with his father in Washington State now. He's 22 years old. I can't believe it. He attends local college, just takes a course or two at a time if something interests him. He doesn't drive, or have any of the real skills needed to live independently. That's a long way off still.

Hard to talk to autistics, even when they can talk. Conversation seems like a painful exercise for them. I can't feel my son searching for the correct response to things. He tries. Our conversations are brief and stilted. Consisting of me thinking of things to say and him giving monosyllabic answers to. It's always so awkward for us both. But at least I get to say I love you and he can say it back. I miss him all the time. I can't wait to move out there to be closer.

Sunday, May 23, 2010

Telepone Conversations

It's so arduous to talk with autistics over the phone. They basically answer yes or no to specific questions. I can hear my son squirming to get off the phone. He can barely read cues from faces when you're talking to him, he can't read anything from a voice. I steer all conversations to what ever he might find interesting. It's a struggle. I love my son, but there's no warmth in his love, he can't project any feelings of love or care. Only in extreme cases.

In high school, his favorite teacher died of cancer. It hit Jake harder than I anticipated. He cried, a first. He thought he could have done something to save his teacher. He was very depressed for a few weeks. It was like he was having his first authentic intense emotion and he didn't know how to process or manage it. I told him to put his face in his pillow and scream and cry. Pushing out the emotion would make him feel better. He followed my advice and felt better afterwards. So sad. Most children gradually learn about grief, like when the lose a pet when they are young. But autistics take so long to emotionally grow - if at all - that when those big events hit, they hit hard.

So don't feel bad if you just can't get that warm loving feeling going between you and your autistic child. It's nothing that you're doing wrong. If you keep yourself emotionally open to them, then that's all you can do. And sometimes they can reciprocate, be it an intensive positive or negative emotion. You have to be there to help them name it and claim it. Experience it and reassure them that all emotions change. If they feel bad now, it won't last, they will regain their emotional balance. Usually it's a retreat to their world of total or near silence. But each venture out of their silent cocoon makes the world a little less frightening for them.

Hope this helps someone, and God bless us, everyone.

Sunday, May 02, 2010

Who Needs This?

I am starting up my parenting blog again after a long absence. I wasn't sure my experiences would truly be helpful to anyone, but a friend convinced me to start it up again after I helped a friend of hers whose 3 1/2 year old son was just diagnosed with autism.

Here's my Advice for Beginners

#1 Don't Panic. There's lots of help out there for autistics and the resources base will only increase as the diagnostic percentage rises. When I had my son in 1990, autism happened once in 30,000 births and was viewed as the mother fault, something she failed to do during a critical bonding period. Today the occurrence is one in 91 births - far too rapid an increase for a 20 year period. I have my own theories about what's causing it, but it doesn't matter for you today. You have to cope with today, however you can, as best as you can.

#2 No parent does less than their best. You aren't raising this kid in a vacuum. You have a spouse, other kids, a job, a senior to care for, or any myriad of obligations that have to be addressed along with everything the kid needs. No parent does less than their best everyday. Considering all the other things going on in your life, you make the best choice for your child in that moment. If you can't take him to PT because there's no money to put gas in the car today, change the appointment, or call the therapist and tell them the truth and find out what you can do at home for the kid today. Then, do your best to fit in in between loads of laundry and figuring out what's for dinner.

#3 Don't swim upstream, don't fight the current of their rituals. Autistics will not relent unless and until their ritual is completed. Does that mean everything and everyone in the house has to predicate their actions on the needs of the autistic? Yes it does. If you break their rituals, they will break you. Just take a deep breath and let them do whatever they have to do in order for the day to go on.

more later, stay well everyone

Wednesday, December 07, 2005

Telling Him About the Birds and the Bees...

Jacob is presently 15, he'll be 16 next month.
His father and I have always shared with him only the information he could handle. Consequent to that, he wasn't told about sex until this past summer. He had a vague idea, but not specifics. This past summer, his Dad filled him in. His Dad told me he listened dispassionately and said he had no questions.

One day, recently, he asked his first sex related question. In a completely monotone with a flat affect he asked,
"Mom, can I ask a sex question?"
"Yes Jake."
"Childbirth, sex and periods....it there anything that happens between a woman's legs that ISN'T disgusting?"
"No. It's all bad. You should avoid it at all costs."
"I think I'll wait till I'm in college to have sex."
"Okay, sounds good."
"Or until I experience a dramatic reduction to my aversion to body fluids...."

Oh... the simplicity of autism...

Thursday, September 29, 2005

The IEP - How the School Can Help

I attended an IEP ( Individual Education Program ) meeting for my boy yesterday, as I have many times before, and it occured to me that some parents could use a little guidance on this.

Attending the IEP meeting (or whatever it's called in your state) will be yourself, the Special Education teacher, other teachers of your child, sometimes a parent representative (advocate), and usually some therapists which may be the Physical, Occupational, or Speech Therapist, Psychotherapist or all four.

Just an aside here: The Physical Therapist covers coordination and gross (large muscles) motor function. They work on walking, hopping (an important indicator of coordination), balance and many body mechanical functions such as getting on and off the toilet independently.
The Occupational Therapist focuses on ADL's ( activities of daily living ), such as feeding oneself, brushing teeth, holding a pencil, using scissors. These are called "fine motor" activities because they all involve using your hands.
The Speech Therapist is the one autistics need the most and the longest. They should be called Speech and Cognative (thinking) therapists. Long after an autistic can speak, they need cognative therapy to be taught problem solving skills (What do I do if I see fire in the house?), abstract thinking ( Why does Grandma call me a honey bun?) , social filters (Why can't I tell an ugly person that I think they're ugly?).

Some parents approach these meeting with an adversarial attitute "They're not gonna tell me what's good for my kid!"

Remember that the people in the meetings are professionals. They do not love your child, nor should they. You are the only one in the room who loves your child. And because of that love, you are biased. This doesn't mean you are wrong, it only means you see your child through the eyes of love which can make hard facts difficult to accept.

I regard the teachers and aides as my tools. Their expertise and experience gives me knowledge of how my child acts when I can't see him. Through their eyes I can gain the objectivity I need for critical decisions.

It is vital that you have a positive working relationship with your child's IEP team!

I find you get what you give. If you bring a hostile attitude and distrust to the table, that's what you'll get back. If you bring a pleasant demeanor and show a willingness to listen, you will be listened to when you speak.

CHOOSE YOUR BATTLES! Before you go into the meeting, identify your three most important objectives. When it's your turn for input, state your objectives clearly and concisely. Limit your non-negotiable items to one or two things.

For example: I shared only one non-negotiable demand: "Jacob must have a one-on-one aide assigned to him for any school trips. He is highly distractable. He wanders and and doesn't have the problem solving skills to get himself out of a jam. This is non-negotiable for me. I'll compromise with you on anything else, but this is a major safety issue."

This is roughly what I said. Please notice there is no veiled threat, no attitude. Just what I need for him, why, and a clear statement that this is my priority item. I got total cooperation on this item because I was willing to cooperate on everything else.

COOPERATION AND COMPROMISE ARE NOT CAPITULATION!

Keep your priorities straight! What is good for your child may not be what is good for your ego. I have often felt foolish when someone suggested something that was so obvious upon hearing it, that I was embarassed not to have thought of it myself! Now, I just say, "What a great idea! I can't believe I didn't think of it sooner!" If a teacher or therapist thinks less of me for missing what they thought was obvious, that's their perogative, it doesn't mean I have to agree.

Educate yourself about your child's condition. Respect the experience and expertise of the teaching and therapeutic professsionals. Acknowledge what is objectively true about your child's abilities. Acknowledge what is objectively true about your parenting abilities. And be realistic, there are no perfect parents or perfect children. Fix what you can fix, do what you can do, and let other people fill in the gaps. Learn to accept help with grace and gratitude. It will be your turn to help someone else soon enough...

Your autistic child will outlive you. It is your obligation to make your child as independent as possible to give them the most secure life you can. I can't speak for other parents, but no single thought frightens me as much as "Who will take care of Jake when I'm gone?" To this end I have and will make all sacrifices called for. I know I am not unique, I know anyone reading this feels the same way.

You can leave questions in the Comments part of this blog and I'll try to help. I encourage you to make entries in this blog to allow other parents to benefit from anything you've learned.

P.S. I know this is politically incorrect, but don't forget to pray. You don't even have to believe in God, God believes in you. Watch for the angels. Strangely enough, the people you need seem to show up in your life just when you need them, you'll think they're a godsend, and hey - maybe they are!



Monday, August 08, 2005

Fishing with Autism

One Saturday a few summer back, my brother David, took me and my two perfect children fishing under a bridge on Shelter Island. David is one of those rare men who actually likes children - he really thinks they're fun. Just as our familes taught us to fish, we now pass this important knowledge down to the next generation. As I told my daughter, "Feed a man a fish and he'll come around everyday. Teach a man to fish and you can get rid of him when your friends visit."

Within five minutes of arriving at the fishing spot, we had the soda and beer in the water, poles baited, and I was dragging my lawn chair into knee deep water. The bait in my pocket would wiggle a little and give me a cheap thrill. I unfolded my chair, sat down and commensed "serious fishing".

My exhusband was a "Catch and Release" Fly Fisherman. He spent more time fiddling with his fly (and that's whole other column) than he ever spent fishing. More over the concept of catching fish and letting it go is as foreign to my family as a liberal thought to Sen. Jesse Helms.

My family are Catch and Filet Fisherman. Under the docks all over Shelter Island, the fish have put up posters of my family's legs at local Sand Bars with the caption, "Warning from the Sturgeon General; Clams scram when you see these legs. Don't let your Flounder founder. Make your Scallop gallup. Get your Striper hyper. Make your Mussel hussle. Otherwise your Bass is grass, you'll be Crab on a slab, Snail in a pail, a Snapper in the crapper, Eel on a reel, Pike on a spike, a dorsal morsal, in other woirds, You're splatter on a platter.....".

My son, Jacob, has autism. He was eight at the time and this was his first time fishing so we were all prepared for anything. His auditory comprehension was very poor, but his visual comprehension was and is, amazing. We call him, "One Take Jake". After ten minutes of fruitless verbal instruction on casting, Uncle David just showed him just once. Jake took the pole and cast a perfect line up and over in a beautiful arc and did it over and over. Yup, over and over. Obviously the lesson about leaving the line in the water until a fish bites is for another day.....

My then eleven year old daughter sunned herself and together we gave directions to tourists who stopped on the bridge and called down to us. Now, I get lost when I turn around in a phone booth. Asking me for directions is like asking Stevie Wonder to drive...... the people we directed are probably still lost.

When my son was through casting, he went to the bottom of the bridge to talk to the hermit crabs. He was reciting word for word the lecture on the 'Life of Crustaceans' he had memorized from a CD-ROM. We all listened because we know from experience that if you interrupt him, he'll start over and over until he completes the sequence. There is a way to stop him, but we left the duct tape in the car.

Suddenly the lecture stopped, there was a splash and then the words, "I got ya". I looked over to find my son and brother gone. As fast as a beached orca can move, I made my way to the base of the bridge just as David was emerging from the swift moving current with a boney eight year old wrapped around his head. He lost his thongs in the process of swimming to get Jake. We gave Jake a new nickname, "Swifty", 'cause now you see him, now you don't...

We left shortly after that heart stopping experience. I gave David my new orange thongs that I had just gotten from K-Mart for four dollars. I know I was going overboard with my generousity. But what the hell, he saved my son's life. I always tell my son he's my "special boy". Once he told my friend , "My mother got me from the hostipul because I was on special."

Sunday, August 07, 2005

Erection? Don't leave home without it....

In the course of caring for my autistic son, I lost a career in hospital administration, lost friendships, lost my husband. I have to say in all fairness, we were having problems before our son was diagnosed, but Jacobs demand's on my time put the final nail in the coffin. I don't think he's ever forgiven me for giving him an imperfect son. When I informed him of Jake's diagnosis, his very first response was, "What did you do?" He was irritated that the CVS (Corianic Villi Sampling) test at four months wasn't able to identify the autism early enough to abort. I admit I would have seriously considered abortion if the test had shown autism. But I remember I could already feel him moving, so I hope I would not have made the choice to abort the blue eyed boy who is the greatest joy of my life today.

Much is being made today about the mercury in innoculations being the cause of the dramatic rise in autism. I hope the mercury is the cause so I'll know it wasn't something I did that harmed him en utero, and I pray to God the mercury isn't the cause becasue then it means I held him down for the shots that robbed him of speech for so long and still rob him of normalcy today.

I realize I can't be blamed intellectually for following medical practices, but it doesn't free me emotionally. How could it? If it turns out to be the mercury, then I just have to live with it, like all the other parents. It's like being the driver of a car that gets hit by a truck and leaves your child disabled. Of course you're not to blame, but the guilt won't leave.

So how can he be a joy to me? This kid who has chipped my teeth by throwing his head back into my face and even broke off one tooth entirely?

Well, autistic children are forever innocent. They see the world without prejudice, without assumptions, without malice. They get into situations that can make you can laugh or cry, so you might as well laugh.

One day Jake and I were grocery shopping. He was about ten. I was choosing coffee and he was a little further down choosing which hot chocolate with mini-marshmellows he was willing to try. Suddenly a woman brushed past me and shot me a look. The look was one I have become very familiar with, it said, "Is that your son? Do you know what he's doing?"

Turning to face Jake, I saw that he was standing in the aisle with his sweat pants and briefs fully extended at the waist band. He was staring down into his pants totally fascinated with something.....

"Mom, look at this," He said in his characteristic monotone.

Fearing the worst, but being a dutiful mother, I peered in...... he had an erection. Then he said, "Watch this." And he made it bounce....

"That's very nice Jake," I said, "but you know ... that's kind of a private activity for a boy. It's okay to play with your peety in private, but not in a store. Okay?"

Being ever obediant he responded, "Okay Mom. But you don't understand because you don't have a peety, all you have is a fluffy and it doesn't do any tricks...."

I laughed so hard, I thought my pants would never dry....if he only knew the all tricks this fluffy has done!

So, there you have it folks, my existentialist angst has been solved ... I don't have a peety, I just have a fluffy and it doesn't do any tricks. The mystery of life has been solved, even in the autistic world, it all comes down to peety's and fluffy's... and just for the record, Fluffy's Rule!