Tuesday, August 31, 2010

When A Single Mother of a Special Needs Child Is Suddenly Ill

Asperger Ninja

As parents, we always worry if our children get sick. That’s part of our job. We are prepared before they are even born, having been told countless stories by our parents, friends who have children ,and sometimes, complete strangers who are more than happy to spin tales of their children’s maladies.

But no one ever truly prepares you for when you get sick. There is no chapter in the Parents Handbook on how to prevent or be ready when you need to be taken care of. That’s usually not an option. Moms, dads, and caregivers are known for working when under the weather, but there may come a time when you have to actually go to the hospital. In most incidents, the other parent will take care of the child (or children) while the other parent is ill. But what if you don’t have that choice?

I’m a single mother of my son, Nathan, who has Asperger’s. When I was married, and a trip to the ER was necessary, my husband did the honors and took care of our child while I convalesced. I had been lucky, not having any major illnesses for the past few years. One, however, came quite out of nowhere.

It was July 2009. I was working for the ARC in their summer camp that year. I remember getting into a minor fender bender on July 12th, which was a Sunday. I am a very good driver, so this really threw me for a loop. I recall feeling a little fuzzy in the head before the accident, so I wondered if maybe I was tired.

The next week, on Wednesday, I started getting some lower GI problems. It was hot that summer, and our rooms at the camp had no air conditioning, so this did not surprise me. I am sensitive to high temperatures, so my body normally reacts this way. I knew to keep hydrated and not worry if I was not eating. 

By Saturday, my symptoms had increased significantly. I was eating next to nothing. I tried to keep water in my system, but it wouldn’t stay. My skin started to tighten around my hands and my feet, a  sign of dehydration. I checked my temperature, but I showed no signs of fever, which would indicate infection. I couldn’t sleep at night, as I was making almost hourly trips to the bathroom. 

Monday rolled around and I was barely conscious at camp. It was a really hot day, I was in the lunchroom, and I truly wanted to pass out -- but our kids had autism, ADHD and bipolar disorder and  it probably wasn’t a good idea for them to experience me in that state.

My co-counselor said, “Amy, you look awful.” 

I said, “Yeah, I feel pretty awful.” 

He said, “You should go to the hospital.” 

Then it hit me. Who would take care of Nathan? Who would get him? Who would be able to explain to him what happened, without him getting upset? That thought was too much for me to handle, so I asked my co-counselor to get me a Popsicle from the kitchen. I promised if I didn’t perk up after eating two Popsicles that I would go to the hospital -- secretly hoping I wouldn’t have to go.

I rallied enough to make it through that day and to go to work on Tuesday, the 21st.  I still was feeling lousy, but had a lot more energy than I had, which I took as a sign that maybe I was finally past this illness. Later that night, around 11 PM, I was woken up from a sound sleep by the most intense abdominal pain I had ever experienced. It felt like someone had taken a knife and had split my stomach open and the contents were burning my insides.  I was terrified.  

I went through my mental list of people I could call. Nathan’s father was over 70 miles away, as were his grandfather and grandmother. Both of my sisters were quite far from where we live. I thought of my best friend, J.T., who only lived ten miles away. I was worried that I would wake him up, but I was also starting to panic, as I needed to know someone was going to take care of Nathan.

I called 911, trying not to cry while I was talking to them. Then I called J.T., who told me it was very okay to call him at 11:45 PM with an emergency. He said he would meet us at the hospital in 30 minutes. I can’t even describe how much relief that gave me, knowing that Nathan would be with someone he knew and felt comfortable with.

The ambulance arrived and they were wonderful with both of us. Nathan was so brave; he held my hand as I was wincing in pain. I kept my face as calm as possible, so that he didn’t know how much distress I was truly having. Ten minutes after we arrived, J.T. showed up and I just started weeping. Tears fell down my face as he hugged me and said, “Its okay, Amy. I’m here.”

I discovered that I had been exposed to fresh water bacteria (by drinking water from a system with older pipes). My doctor proudly announced that he had never heard of it and had to Google it. I took two days to recuperate, in and out of feeling tired and nauseous. They gave me Ciprofloxacin, a strong antibiotic with the side effect of sun sensitivity. I spent two weeks sympathizing with vampires, feeling like my flesh was burning off during daylight hours.

This experience was one I definitely do not want to have happen in the future. I think if I had been a bit more proactive and had gone to my doctor earlier, even without signs of infection, he would have treated me and I wouldn’t have had to go to the ER. I think as parents we neglect ourselves and focus all of our energies on our children, which is very common. However, if we do not take care of ourselves, we are not the only ones we put in jeopardy. 

Special needs parents have to go above and beyond what is necessary to ensure their good health and well being. Since then, I have made sure that I have more than one person I can call if there is an emergency. I have also taken better care of myself, so that I will minimize the possibility of a repeat performance. I learned my lesson in the hardest way, but have taken steps to ensure that I will be more prepared if it ever (hopefully not!) happens again.

Monday, August 30, 2010

My Child Has Autism...


My child has autism ... and I, as his mother, have never felt so isolated in my life.

My son has severe speech delays. This is why he doesn't talk to you.
Why don't you speak to him?

My son perceives the world in a unique manner. This is why he plays with toys in an abnormal way.
Why don't you play with him?

My son has difficulty understanding social cues. This is why he avoids eye contact.
Why do you stare at him like he's an animal in a zoo?

...Or even worse, ignore him, as if he's not a human being.

Being his mother does not make me a saint, though sometimes I feel like a martyr.
His condition does not mean that God entrusted me with a special blessing. Autism means he was born with a formidable glitch in his hardware ... a glitch I wish daily that I could fix.

The blessing I receive is when people invite us to events -- even when we're unable to attend and they know this ahead of time.

I feel blessed when people ask how my son is doing -- even when I have no good news to relate and this is evident by my countenance and bearing.

I may not be able to get together with you, whether because I feel beaten down by this neurological demon on that plagues my dear child or simply because of time constraints ... but please don't stop reaching out to me! Sometimes just knowing you're there is exactly the lifeline I need to get me through the day.

I may not always participate in idle chatter, whether because I'm dwelling on my child's very real and significant challenges or simply because I'm tired ... but please don't stop talking to me! Sometimes I need to be reminded that a world exists outside of autism.

My child has autism ... and I, as his mother, have never felt so isolated in my life.
And I need you.

Friday, August 27, 2010

Meeting Maddy

Jennifer Byde Myers
www.jennyalice.com
www.canisitwithyou.org
www.haveautismwilltravel.com

It was almost dark when we pulled in to the campground in Ohio. I went to the door of the manager's office, and the sign said, "Will return 9:00."  I am an eternal optimist (HA!) and hoped that it meant in eleven minutes at 9pm instead of 12 hours later. We had a reservation, called in hours before, but there were no instructions left for us taped to the door. Most RV parks and campgrounds will do this, so you can still find your way in the dark.

As I stood there on the porch, looking back at the RV, knowing that my children were probably yelling at my tired husband because they so desperately want to get OUT of the RV when we stop, I thought I might die of exhaustion. I wilted a little in the heat, and began to survey the campground hoping I could figure out a solution on my own.

Out of the brightly lit laundry room next door, Maddy and her sister Lila appeared. Chattering like little monkeys, they peppered me with questions: Where was I from? How long were we staying? How many kids did I have, and can they go to the playground?

Without waiting for my answers, they told me just about everything they could: parents divorced, mom's boyfriend has a camper, staying for two weeks, actually 13 days, trying to do laundry, but missing a few quarters. Lila is older. Maddy is younger. They live nearby with their dad. Lila just completed a babysitting course. They have bikes.

And they knocked on the door of the manager's office spouting that it was "worth a try."

The manager came to the door, gave the girls some quarters, then looked at me. I admit I was a little embarrassed, wondering if she thought that these not-quite rude, but not well-mannered children were mine.

I told her my name and she welcomed me in to the office/general store, and shooed the girls away. As I checked in, we chatted and she let me know that the girls, while sweet, were not monitored very well, so I should expect to see them at all hours of the night (she wasn't kidding.)

After we landed safely in our space, I let Shawn put out the slides, put up the jacks and make ready our camp for the night while I took the kids to the park, just an earshot away from our numbered space.

Sure enough Maddy and her sister were there at the little park. Katie made friends immediately, identifying easily with other motor mouths. I let go of Jack's hand when I found a pile of gravel. He settled down, and went about sifting the land through his fingers, getting back in touch with Earth after so many hours on the road.

He tilted his head to the side, as he often does when he is very interested in something before him. He watched the girls play. He stood up a few times, dribbling pebbles to the ground slowly, then went down on one knee to grab a few more.

By this time it was mostly dark. I could see the outline of the three girls, but could no longer distinguish faces.

Katie lost a shoe. I had been very specific about not taking off her shoes while playing on the playground. I heard Katie whimper a bit. Lilly pulled a flashlight out of her babysitter emergency kit, and searched the grass with Katie. They found her shoe, and Lilly sat with her while she put it on.

Maddy came over to where Jack was playing.

"Hi. Uhm, how old is your boy?" 9 1/2.
"I'm the same age. When's his birthday?" October.
"Will he play with me?' Yes. Sort of. Let me explain...
"I've never heard of autism."

Never. heard. of. autism.

There are still people who've never heard of it. I don't remember ever not knowing about autism, but whatever the statistics are, whatever the numbers that people throw out there, the numbers that make autism seem as ubiquitous as heartburn, there are people who have never heard of it, and my family, in this case, will shape forever what autism means, what autism looks like, for this little girl. And this is where I am most comfortable; teaching, advocating, changing the hearts of people one family at a time. If I do this right, Maddy will know that Jack is different, but the same, that he is as important as she is. She will know that he plays and laughs and has a mom and a dad and a little sister, and feelings, and deserves to be acknowledged, and treated with respect in our society.

I answered every question she asked, her stream of words, more river than creek. Some of her queries were hard: How do you know what Jack wants to play? What is his favorite color?

And some were easier to answer, even if I don't know the answer exactly: So does he understand me? Can he see okay? What is his favorite food? (for the record, we believe it's ice cream.)

The most remarkable part about the conversation, was that she was playing with Jack the entire time she was asking the questions. When he got up to wander, she followed him, backwards, even lightly touching his hand every now and then, and when he bent to slip his hand in a pile of sand, she copied him, right down to the same crouched position he favors. When he stood to run, making those sounds that Jack makes, she asked if he was happy, because it "sure sounded like happy."

It was dark now, dark enough that I wasn't more than two feet from Jack anymore. Shawn walked over from the campsite with a flashlight.

I started to get distracted, the dark, Jack loose from my grasp, Katie chirping to her dad about her new friends, and losing her shoe, and finding her shoe.

Maddy quietly said to me, "I hope no one makes fun of him, ever. When I was younger I couldn't see out of one of my eyes and people made fun of me."

I told her I was sorry that that had happened to her, and asked her about her vision now. "Is that why you asked if Jack could see okay?"

"Yeah, I was wondering if we were the same, 'cause I know how it is when you can't see--when you're different."

It was time for us to call it a night. We said our goodbyes.

Maddy walked up to Jack and put her hands on his shoulders, facing him.

"I'm glad I met you Jack. Have fun on your trip."


The Myers family has just returned from a 4000 mile, cross-country road trip. They documented their journey at www.haveautismwilltravel.com where a version of this essay was originally posted. You can find her, now that she's home, on Twitter http://twitter.com/jennyalice.

Thursday, August 26, 2010

When You're Gone: Practical Planning for Your Child's Future

Shannon Des Roches Rosa
www.squidalicious.com
www.canisitwithyou.org
www.blogher.com/blog/shannon-des-roches-rosa


A lot of us parents like to put our hands over our ears and shout LA LA LA LA LA when asked to think about formulating a life care plan, because that means we're envisioning the future of our children with special needs without us at their sides. But denial and avoidance do both us and our children a disservice. The time to think about planning for our children's future is now -- the earlier we start, the more comprehensive our planning will be. And the steps involved are both more involved yet less daunting than you may think.

The following summary is based on a 2010 SEPTAR.org presentation on Financial Planning and Your Child's Future, given by Nick Homer, a Special Care Planner from MassMutual's general agency in San Jose, Miceli Financial Partners Wealth Management and Insurance Services (MFP). While the following information is critical, it is not official advice but rather a primer on how to get started and what to look for. Once you're ready to take action, you should consult with professional special needs financial planners, and lawyers who specialize in special needs trusts.

What is a Life Care Plan?

Life care plan: takes into consideration the life, needs, and goals of people with special needs. Its about taking care of an individual with a disability after their parents are gone, and ensuring quality of life for that individual and their remaining family in all areas of life.

The goal is to create a flexible roadmap for the person in question's life: If any new therapies, medications, government benefits, etc. emerge, the plan needs to be able to adapt.

Misconceptions About Planning for Your Child's Future

"It's not affordable."
But if you sit down and talk, that is helpful. Many special needs financial planning agencies do not charge fees for preliminary consults and advice.
"Someone will help financially."
People who are waiting for a benefactor will put their faith in grandparents who say, "Don't worry about it, we have money, property, business, we'll take care of your child." So people don't plan for the unexpected, like a parent with stroke or Alzheimer's who then needs to direct their assets towards their own care. If that happens and you haven't done planning for your child because you were waiting on grandma or grandpa, you've lost a lot of time.
"Trust accounts are only for the wealthy."
But anyone who owns property or has assets can set up living trust that avoids probate and allows your assets to be passed onto your heirs.
"Everything will be taken care of in the will."
A will is an important legal asset, but it only says what will happen to your assets at death, who be the guardian of your children, and who will be the custodian of your money (guardian and custodian are not always the same person).
"Siblings will provide care."
Sometimes parents leave everything to a typically developing sibling, assuming they'll take care of their sister or brother with special needs. But what if sibling isn't financially savvy, or falls in with someone who's not financially savvy? Or get divorced and the ex takes half of the money intended for the sibling with a disability?

Components of a Life Care Plan:
  • Life care plan vision
  • Letter of intent
  • Guardian/conservator
  • Financial and support services
  • Special needs trusts

Ten Comprehensive Life Care Planning Steps (Money is only part of it!)

1) Address Primary Issues.
  • What will my child do for schooling?
  • Are we working on a diagnosis?
  • Conservatorship -- lining up benefits like MediCal? What about family issues, do we have family in the area, do we have family members who "get it"?
  • Need communication throughout process, discussions between legal professionals, parents, doctors, etc. will make planning process easier, so can avoid mistakes.
2) Create a Life Care Plan vision
What you see happening with your child as they learn and grow. Some people assume their child will live with them forever. Others know that it may not be possible due to increasing behavioral challenges, strength, size.
3) Choosing Guardians/Conservators
Often spouses have different ideas. Planners can help you prepare for best and worse possible outcomes (what if very best auntie marries a loser who doesn't get your kid?).
4) Identifying Financial Resources
Whatever money/assets you have. 401ks, government benefits, inheritances, etc. compared to your monthly and annual costs that will recur after you die.
5) Have to Plan for Your Own Retirement, As Well!
Best thing you can do for your kids is to plan to be personally financially secure in the future.
6) Letter of Intent
  • The personal side to the plan.
  • Tells the caregiver how to step in and be the parent, take care of the child.
  • Talks about what your child is like, what the caregivers will need to know, what their quirks and routines are, what soothes them, doctors, medications, therapies, allergies.
  • It's not a legal, binding document, but it sets a precedent and will hold up in court.
  • It's a living document and will change. Recommend that it gets update with each IEP.
  • Many people keep Letters of Intent on flash drives (some medical jewelry now includes flash drive pendants).
7) Will
It is a legal document that establishes who takes care of kids, who watches over the money. But it will not avoid probate, will go in front of judge, will be public information. Goes along with the trust.
8) Special Needs Trust
  • Designed to ensure that adult children with disabilities never get disqualified from government benefits.
  • Needs to be stand-alone from any other living trust you may have.
  • Trust is irrevocable in your child's name once funded. But the trust owns the assets, not the child.
  • You really need to go to someone who has designed one.
  • It doesn't have anything in it -- it will be funded upon your death.
  • What are the criteria for establishing that a child qualifies for a special needs trust? Diagnosis is not required. All that needs to happen is parent draws  up SN trust with lawyers.
  • Your other children can be beneficiaries as well, or a charity if there's any surplus.
  • You can gift to the trust.
  • If child has more than $2,000 in their own name, they do not qualify for government benefits, and the government will seize assets and incur benefits until that money is spent down.
9) Whole Family Meeting
  • Once you've gone through the process, you want to have whole-family meeting.
  • Send out a letter to relatives who might designate your child as a beneficiary, saying "We're not asking for anything, but if you don't set this up the right way, it'll screw things up."
  • Also make sure guardians know they're going to be guardians.
  • Recommend naming a corporate trustee to handle all the financial aspects, investments, cash management, bill paying, and not the actual caretaking.
  • Caretaking can be a separate legal role (where the Letter of Intent comes in).
10) Review Life Care Plan Periodically. Life changes, life happens.

----

One option for finding a certified Special Care Planner like Nick Homer is to visit massmutual.com/specialcare. Thinking Person's Guide to Autism neither endorses nor is supported by Miceli Financial Partners, Nick Homer, or MassMutual.

A version of this essay was originally published at BlogHer.com

Wednesday, August 25, 2010

On the Verge of a Meltdown

Prather Harrell

No, not my autistic five year old son ... I’m the one on the verge of a meltdown!

It was one of those days where I could not seem to make anyone happy. Jonah, my five year old, had been having a bad summer all along. I can’t say that I blame him. Here we go changing his schedule around from KinderPrep (ABA/habilitation) in the mornings and public preschool in the afternoons with a few therapies sprinkled in between, to therapies in the morning and KinderPrep in the afternoon and no more Mrs. Marsha period (his preschool teacher – Jonah completed preschool this spring and will be headed to Kindergarten this fall). The teachers changed, the students changed, some of his therapists changed -- we flipped his entire schedule around and no one ever consulted him about it. I guess I’d be pretty pissed too if somebody started messing with the calendar in my blackberry and just expected me to go with the flow.  Much like my son, I don’t always handle change very well (I can be a little bit autistic that way).

I was simply trying to get out the door to drop off Jonah to physical therapy and none of my three boys were cooperating. My seven year old son Julien was acting like my two year old son, whining about having to eat pancakes instead of cereal, my two year old son Jace (who started his terrible twos at eight months) was being his typical demanding self and didn’t want to eat at all, and all the while Jonah was screaming at the top of his lungs about having been asked to brush his teeth. My husband was at work and I was at my wits' end.

Jonah’s behaviors had reached an all time high this summer with his screaming and tantrumming at every request we made of him. It was as if I had two toddlers all summer long. I had been as patient as I could possibly be and I just didn’t have any patience left. I told Julien to straighten up and finish his pancakes or once we got back he wouldn’t be able to watch any TV, all day long. I turned on Thomas the Tank Engine to distract Jace for a few minutes so I could deal with Jonah and finish getting him ready to go. Jonah was beginning to get very angry and yelled, “I don’t want to brush my teeth!” I just looked at him. For the fourth time he pleaded, “I wanna play computer!” and for the fourth time I said, ”First, you have to brush your teeth and finished get dressed and then you can play PBS Kids.”

All Jonah heard was the word "first," and he started to lose it.  He paid no attention to the rest of that sentence as he purposely got louder to drown out my denial of his request instead of actually hearing what I was saying to him. He continued to scream and whine, and it was like nails to a chalkboard -- I couldn’t take it anymore! I grabbed Jonah by the arm firmly and yelled,

“JONAH, IF YOU DON’T STOP SCREAMING RIGHT NOW, YOU ARE GOING ON TIME OUT, AGAIN!” 

He’d already been put on time out once that morning by his dad before he left for work. We always allow the kids to feel what they’re feeling and try to validate how they’re feeling, but we give them two choices: feel bad (cry, scream or whine if they need to) alone in their rooms, or stay amongst the family, calm and pleasant. If they need time to themselves, that’s fine and when they feel better (and only when they’ve managed to compose themselves and can stop the crying and screaming in front of the rest of the family) they can come out and join the rest of us.

Jonah persisted to protest so I marched him into his room and told him, “You can come out when you’re ALL DONE SCREAMING!” I had to say it loudly so he could hear me ... at this point it had become a contest as to who could yell louder.  Then he proceeded to do what he always does, which was to scream AS LOUD AS HE POSSIBLY COULD FOR AS LONG AS HE COULD, through the bedroom door, until he grew hoarse and voiceless.

It was glaringly obvious that this separation technique was not working well at all.  It simply stressed him out, stressed me out and no doubt bothered Julien and Jace, too, as they stared helpless and scared in the corner of the kitchen. My eyes welled with tears as I felt defeated and thought to myself, “God, there has got to be an easier way...”

In that moment, I decided to step into my bedroom where I could be alone and collect myself before I fell apart. I spent a couple minutes beating myself up for handling the situation all wrong. I shouldn’t have yelled. I shouldn’t have put him on timeout again -- it clearly wasn’t changing his behavior. Was this autistic behavior or was he just being a testy five year old? I should’ve taken it easy on him. I shouldn’t discipline the autistic tantrums, just the five year old tantrums. Which ones are which? I should have given him more warning before I asked him to switch from a preferred activity (playing on the computer) to a non-preferred activity (brushing his teeth). I should have never let him play on the computer before getting ready for therapy in the first place. I should have never taken down his picture schedule. The list went on. 

Then, something told me to just stop. I took several deep breaths and said a quick prayer for God to grant me strength, patience, and clarity, then returned to the kitchen. Just as I was walking out of my bedroom, Jonah was walking out of his.

He looked at me with very sad puppy dog eyes and said tearfully, “I’m all done screaming, Mommy.”

I replied, “And what else do you need to say?”

He responded, “I’m sorry mommy,” with a quivering bottom lip.

I kneeled down eye-level to him and responded, “You make mommy very sad when you scream and cry. But I get very happy when you use your words! Show me your happy face.” He proceeded to force a smile. 

I said, “I love you. Do you feel better now?” 

He said, “Yes.” 

We hugged and then I said, “Me too! Now go brush your teeth.” 

He complied. And that’s when it hit me ... look at how far he’s come! Even in the midst of the tantrum drama, he verbalized his protests, knew how to say he was done crying, and is about sixty percent able to brush his teeth on his own. Wow! I shouldn’t be beating myself up, I should be patting myself on the back, in awe of all of the hurdles we’ve jumped and mountains we’ve climbed. 

I should also note that, unfortunately, I’m not excused from the hardships of motherhood and parenthood just because I have a special needs child. The rules don’t change. There are going to be good days, great days, bad days and horrible days. My kids will take everything out of me, a lot of which will go unappreciated and unnoticed. And yet I will continue to give them everything I’ve got, and then some. I will make some parenting mishaps and mistakes. I’m going to lose my patience at times, I’m not always going to choose the best form of discipline, and despite my best efforts my kids will not always comply with my rules and requests.

Time out may not be the most effective method of discipline in every case, especially for a child with autism, but I also have to remain cognizant of the standard I’m setting for all of my children. The rules of the house don’t change for Jonah, and he is neither exempt nor excluded from anything we do (no matter how difficult it can be for him at times). It might take a bit longer to implement and we may have to adjust the technique, but the rules for Jonah are the same for Julien as they are for Jace. There are no free passes!

When my beautiful young princes become adults in society, they will neither be exempt nor excused from following the rules of society just because they (two of them) have special needs. They’d be lucky if anyone even bothered to ask them if there are any special circumstances that need to be taken into consideration before a decision is made that may impact their futures. And since I am raising African-American men, this is of huge concern to me -- the rules of society are especially strict for these young men. I have to make certain that Jonah and his brothers know without question that rules are there for a reason, and if they aren’t followed, there will be a consequence for their actions, whether they like it or not.

For any parent out there on the verge of a meltdown, it’s okay! Just remember to take a lot of deep breaths and honor the space you’re in. If you’re tired, lay down. If you’re stressed, take your own timeout. If it’s a good day, pat yourself on the back! And most importantly, take it easy on yourself and put the “beat myself up" bat” down. As a matter of fact, it would be best to take it out with the trash!

Friday, August 20, 2010

Quality Time

TPGA is taking a wee break as all but one of our editorial staff is traveling -- with our children with autism -- and that is a rather time-consuming and internet-unpredictable undertaking. We'll resume posting essays on Wednesday, August 25th.

We're very grateful for the fat pile of submissions both published on the site and upcoming, and encourage you to submit more, share more, build community more. The discussions in the comments  have been fantastic! Our thanks to everyone who has helped our community thrive.

While we're away, you can check out what our editors have been up to:

Liz has been doing helpful TPGA round ups:
Jen is currently in ... Yellowstone? Read about her family's cross-country motorhome adventures at Have Autism Will Travel. She's also been:
Shannon is about to take Leo to his first wedding in seven years. She thinks it will go well! Here's some of her other August doings:
Science editor Emily is in the process of relocating her entire family (not a small task). Somehow, she's still managing to keep up with her trademark intelligent, analytical blogging:
See you on the other side!

Thursday, August 19, 2010

Comparative Misery and a Born-Again Buddhist


I have experienced what Slate's Tim Wu calls That Misery Called Meditation.

So much in the press these days claims we should all start meditating, and it has such a positive profound effect. It's inexpensive, anyone can do it anywhere, and it's the antidote to our busy stressed-out overly-technical lives. But some of us don't have time, and most of just don't want to sit and do nothing -- it sounds stupid and boring. We have more interesting things to do with our time.

I like Wu's article because it reads like a male chapter out of Eat Pray Love. Any implications I'd heard or imagined about that self-indulgent woman being a fluffy time-waster who thinks too much, talks too much, and writes too much -- as in, "Why doesn't she settle down and get a real life with a house, a job, a car, etc?," is rounded out by the fact that this article is written by a man. It's nice to see that they can be just as useless as we can, for a change.

When the article starts, my judgmental voice rears up again, just as it did for the female author -- why does Wu have the luxury of so much time to sit and meditate, and complain about such an easy lot in life as "sitting"? He could be working his hands literally to the bone in a factory, on a farm, fixing cars -- something useful to his family and society. And so I conclude that meditation is a hobby for the rich and idle -- people who are independently wealthy, who don't have to work, they have no responsibilities -- just free open-ended time to think. What a waste! (That's my Protestant work ethic speaking, I get it from my dad's side.)

But I know from where he speaks. I've felt that misery of meditation. I've seen those meditating zombies, walking slowly and dragging their feet, and thought the same thing about them, about us. And I didn't get there because I wanted to write about it. And I didn't get there because I had the luxury of time. Well, yes -- I certainly did have some luxury that enabled me to take mindfulness classes that concluded with a full-day retreat. I didn't have an hourly job, living paycheck to paycheck -- so I admit, I was lucky enough to have the opportunity to pursue meditation. But it was pain that brought me there -- not boredom or a search for an article. And not so much physical pain, though my migraines certainly qualify. My pain was internal, ethereal -- not "real" or tangible to anyone except me.

The pain is in my heart: my child is deaf, going blind, and is autistic. I can't even say or type those words without the lump forming in my throat and threatening to steal my voice away again. Or send me running to the bathroom to lose my lunch. I practice saying them -- out loud to as many people as I can, without crying, without explaining or justifying (I haven't achieved that yet) so I can get used to them -- so I can adjust. So I can accept it, accept him for who he is, and not keep wishing he'd be different, better, and that his problems would go away and give him a chance to be "normal," better than normal.

So instead I always try to qualify it -- he's deaf, but he has cochlear implants so he can hear, speak, read, play piano, go to regular school and do regular academics. He doesn't need sign language. I try to defend him, lest, god forbid, I admit he's disabled. 

He's going blind, but he's not blind yet, I say. He's lost most of his peripheral vision due to Usher syndrome, but you'd never know it -- he rides a bike, ice skates, swims. We don't know when he'll become legally blind, but we know it will happen. This is the part that brings tears to peoples' eyes, which I can't handle, so I tend to say it fast and look away so I don't have to see their reaction, which would make us both cry and scream about how unfair it is. He's already lost so much of his peripheral vision that he can't see things just to the side of him. He trips on things on the ground because they are also out of his vision range. He will never be able to learn to drive, never have that freedom. 

He's autistic, but high functioning -- very smart, incredible memory, fast learner, no noticeable stims -- I defend again. Just a little spacey. He doesn't look at you, but he listens and hears, and remembers. I try to couch it in my description so that he doesn't come across as really disabled. My true fear. My reality.

The reality of it, being a parent of a child with special needs, multiple disabilities, hurts severely. I love him to the depths of my being. But I worry about him so much, I'm so scared, so terrified some times I literally cannot function. Can't eat, can't sleep, can't stop crying. The list of things that needs to be worried about runs endlessly through my head -- Will he be okay today while I'm meditating? Tomorrow at school? Next year? At his next school? Over the summer at camp? Who will keep him safe from the taunts of bullies? I heard those voices only once -- in a changing tent at the swimming pool, while I waited outside for my son to change. "Hey -- can you hear me?" the other boys called to him. "Ha ha! He can't hear me! Hey -- are you, deaf? He's deaf!" and so on. Once the changing was complete, the boys exited, and I let them know that I overheard them and asked them not to do that again. They seemed more surprised that they'd been caught than remorseful that they done it in the first place. That'll cause a migraine. That'll make me cry for days. And worry about what's being said about my son, to my son, when I'm out of earshot next time.

And so I sat in misery and tried to meditate for a whole day. First I took an eight week class on the subject of meditation. And then another six week class geared towards parents. The misery was in my body, in my mind, and in my heart. In addition, I meditated at home alone, listing to Jon Kabat-Zinn on my iPhone. When I couldn't stand that (45 minutes is an awful long time for a beginner) I listened to Amy Saltzman, who taught the mindfulness for parents class. She has a fifteen minute version -- which is more palatable to me as a busy mother, but also more tolerable for my starting point of having my stress level so high. 

I started by practicing five minutes. Gradually worked up to ten, then the whole fifteen. Occasionally even her 30 minute meditation. Did I do it right? No, of course not. I laid on my bed, instead of on a mat on the floor or sat on a cushion or chair. I fell asleep more often than not. I learned to not judge myself -- if sleep was what I needed, then I got that, and it was good. Occasionally I stayed awake and actually calmed my mind -- with no side effects, which I consider a near miracle.

Even the beginner "body scan" mediation was pure misery for me at first -- the most misery-inducing I'd say. This is the one where the voice gradually tells you to relax each part of your body, starting with your toes, and working up, until all the tension is released. My version of that misery meant that the tension left my toes, and moved up to the next body part. When it left my legs, the compounded tension from feet and legs then entrenched itself in my stomach. Leaving the stomach, the ever-growing pile of stress took ahold of my shoulders. Until finally, it escalated to my head -- but instead of feeling relaxed, I'd given myself a full-force migraine headache -- with all the tension from the rest of my body now compressed into my too-small brain -- feeling like it was ready to explode, and that if it did, it would be a relief. For at least a year of practice, I never got to complete the body scan meditation all the way to the top of my head. I either fell asleep, or went running for the ibuprofen. Not a successful meditator, by a long shot.

Then I got to the loving-kindness portion of Amy Saltzman's CD, and it blew me away. No, I still couldn't meditate effectively while listening to it, but I realized things I'd never realized before. I gave it to a friend and she cried for the whole session. I gave it to my sister, who couldn't make it past five minutes before she had to stop. It's incredible, and everyone should experience it, but it only makes sense in context of the rest of the mindfulness meditation program.

I also had moments where I felt that joy of loving kindness, like Wu as he moves beyond the misery -- but mostly I'm still stuck at Phase Two, in which I turned the harsh process of meditating into one that distracted me with my good memories instead of being present with my painful reality. When I experience that joy, I embrace it. I don't know if I'll ever get to Phase Three -- to move beyond the pain, past the distraction, and into enlightenment, even for a short time, as the author did. I still struggle to conjure up good memories to get me through the pain. That's hard enough for me right now. So I'm staying there for as long as it takes.

I'm glad Wu wrote the article. I'm glad he showed the dark side of meditation, instead of making readers feel guilty because they're not so highly evolved as to enjoy and engage in it regularly. I'm glad he admits that it's a miserable experience. The terror that fills me when I think about how my son's future may evolve is painful

Even if meditation is miserable some times, it has taught me to realize and embrace good times. It has helped me realize what I can endure. Distraction was good for me -- parents can over-focus on their child, as I had, and I needed to rise above it, beyond it. I needed a dose of comparative misery. Worried about your child's life? Try doing nothing! Thinking nothing! Moving nothing! Ha - how's that misery for ya?! 

Early intervention and intensive therapy saved my child, advocating for his IEP services, fundraising for cures, researching treatments, networking with other parents -- all this "doing" gave my son all the abilities he has right now. Inaction would be the death of me, so I have to keep trying to feel the feeling of stopping trying, so that when I resume going again, I can notice the difference. I can pace myself. Maintain some balance, and not burn out. Or explode.

When I come out of my meditative state, misery, distraction and all, I am sometimes a little less terrified. I'm able to relax, hug my son, listen to him, look at him, engage with him. And that is worth all the misery in the world. I'd take that trade any time.

So I'm a meditation convert -- a born-again Buddhist, in a way. And, like Wu, I want people to know that meditation can be miserable, can cause suffering, but also that it can free us from our suffering, help us realize the joys we already have. It can free us by making us realize we have a choice in how we view the misery we're stuck in. We don't have to panic. We don't have to let our migraines continue. We have a choice. We can sit. And do nothing. And that is truly something.

Wednesday, August 18, 2010

A Short Cut for Making PECS-Style Icons

Jennifer Johnson

What are some of your short cuts? -Editors

My son’s ABA therapy provider started my son on PECS (Picture Exchange Communication System, an icon-based "functional method of communication" for people with verbal or motor communication challenges) when he was about 18 months old. I wanted to make the PECS myself so that we could have them all look them same whether they were for an ABA session, or for choices for snacks.

So, I took photos and cropped each one, sized them, printed them out, etc.  It took me hours to make just a few of them, and I wondered how on earth I would be able to keep it up at that pace. Then I spoke to another of my son’s therapists, who like me had a son with ASD, and she shared a clever time-saving method that I want to pass along.

Suggested Materials:
  • Digital camera
  • Color printer for computer
  • Card stock (heavy weight paper, 50-90lb weight works)
  • Personal laminating machine (Avon sells one, so does 3M. I have seen them for $25-50, totally worth the money if you laminate a lot!)
  • Laminating pouches (Often in a store's office section, but I have found better prices online.)  I prefer the 5mm ones because they are sturdy enough to hold up to wear and then don’t need to be mounted on card stock first.  If I use the 2-3mm, I mount on card stock before laminating.

Here is what I do:
  • Take photos of each icon item, with a plain background if possible (I use a white towel)
  • Load photos onto computer
  • Open Microsoft Word
  • Select the Tools menu, then select Labels
  • Find the Options button, and click to open a scrolling list of Label Options
  • Choose Avery 8196, Diskette Labels. This will give you a grid of nine square spaces.
  • Drag and drop photos into individual label spaces. Click on photos within spaces to resize as needed.
  • Print on color printer

I paste onto card stock (to make them thicker) and cut out each one and then laminate. Though I have tried just laminating the whole page and then cutting out, but sometimes the edges peel up. Having the plastic seal around each icon is helpful and makes them last longer.

You may need to experiment with your photo file size so that your images have a high enough resolution to print good icons, but aren't so large that it takes a long time to drag-and-drop them into the Word document. One option is to adjust your camera's image resolution before taking the pictures, another is to change the individual photos' resolution once they are on your computer.

Tuesday, August 17, 2010

'Autistic' or 'Person With Autism'?

Jean Winegardner
www.stimeyland.com

When I write my column Autism Unexpected for Washington Times Communities, I use the words "person with autism" and "autistic person" pretty interchangeably. Every once in a while, I get a comment telling me I should use "person first" language, meaning I shouldn't use the word "autistic" to describe a person.


Because I've heard this criticism more than once, I feel it necessary to tell you that I not only use the word "autistic" intentionally, but thoughtfully and with purpose.

The theory behind person-first language ("person with autism") is that it recognizes the person before the disability and stresses that there is more to a person than just autism. I asked my blog readers and my Twitter followers which they preferred, and the majority, mostly parents of children with autism, reported that they prefer the person-first terminology.

Person-first language is an easy philosophy to accept. It makes complete sense, and I find it to be a perfectly reasonable way of thought. However, I tend not to prefer it. The reasons for rejecting person-first are more complicated, but, I believe, equally valid.

I use the adjective "autistic" for several reasons. I have taken my cues from many autistic adults who self-identify as autistic. For these individuals, autism is simply a part of them that cannot be separated from who they are. Autism is, in a way, a description of how their brains work, not something that has been added to their being. Without autism, they would not be the same person; therefore it is not something they have, but rather something they are.

Autistic adult and autism activist Jim Sinclair wrote a very clear, articulate essay about why he dislikes person-first language. This essay lays out why he identifies as an autistic person, and his reasons are very similar to mine.

I use "autistic" because I don't see autism as an affliction but rather as a character or physical trait (such as blond, nice, intelligent or short) or as a major life characteristic (such as religion or race). Often, person-first language refers to a disease: "living with cancer," "a person with lupus," or "has AIDS." I think this type of language, while not necessarily wrong, doesn't work with autism in that it tends to pathologize the condition, which I do not see as a disease but rather a way of being.

My entire goal with my son is to raise him as a proud autistic person. He is what he is, and that is wonderful. I want to teach him that his autism is a part of him that gives him the gift of being able to think differently. It also gives him challenges, and he needs to learn how to compensate for those shortcomings. But, I don't want him to think he has this extra thing that makes him less.

I do understand many people don't care to hear their children referred to as autistic. I respect that. When referring to other people's children -- or other adults for whom I don't know their preference -- I almost always use the phrase "person with autism." For my own son, or when referring to people in a group, as I've mentioned, I use them interchangeably. Once my son is old enough to have a preference, I will follow his lead and refer to him as he sees fit.

I personally subscribe to a live-and-let-live philosophy. While my beliefs lie with "autistic," I tend to use whichever phrasing works better in my sentence. I also see many people feel passionately about person-first terminology. I would like to let these people know that, when I use the term "autistic," I am not doing so with derision, nor am I making a comment on you, your child or the people you know with autism.

I have a tremendous amount of respect for people with autism and their caregivers, and, no matter what terminology I use, that will never change.

----

This essay originally appeared in Washington Times Communities' Autism Unexpected.

Monday, August 16, 2010

A Single Mom's View of Autism Divorce Rates

Estée Klar
www.esteeklar.com

I have always found the idea of blaming the autistic child for the deterioration of marriage unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might in some way be true.

A single mom of an autistic child for several years now, I’ve seen that when relationships fall apart, we begin by looking outside ourselves for the external causes to blame. No matter what the circumstance, illness, disability, death are the certainties of a full life. We make vows for better or for worse, even if most of us want the "better." Frequent divorce seems to reflect the advent of the re-start button -- an impatient, quickly gratified culture with many options at our fingertips, and a waning attention span. It's perhaps an unforgiving view about what as I see as the marriage du jour -- the one that bypasses commitment. Even so, two people who come together with the best of intentions (or delusions), sometimes cannot endure the stress when faced with life's many challenges. This has nothing to do with autism.

Consider some of our flippant views about marriage and commitment against the last decade of autism in the media. The media and many in the medical field created an environment of fascination and fear about autism. Most parents relate to the panic we felt on the day of the official autism diagnosis. We heard and read that we had a six year window in which to cure our children. That is, we were told that if our children didn't talk and lose those autism behaviors by the age of six, our children were doomed to be autistic for the rest of their lives. With such pressure, as individuals and couples, we can be extremely challenged. Coping with stress and even grief is different for all people. Press restart?

It shouldn't come as a surprise, then, that autism is frequently blamed by some autism charities, and in the media, for divorce. When we blame something else other than ourselves, such as perpetuating the notion that autism is to blame, the innocent autistic child is targeted. This creates reasons to research autism in order to eradicate it. As a result, it is one more reason added to an exhaustive list of why we must cure and change the autistic child as quickly as possible. Instead of considering that all children are a test -- that in fact, all of life is one big test -- we yet again blame the autism.

In comparison to other disabilities like dyslexia, Down syndrome and deafness, public policy makers and educators still struggle to understand autism. We are just beginning to learn about the accommodations autistic people need in order to contribute as autistic people (as opposed to having to change in order to become normal for normal's sake -- this no longer happens with many other of the disabilities). There is more stress when parents have to fight to get kids into schools, obtain financial support, acquire respite help, augmentative communication devices, and social skills. In later years, we seek appropriate housing accommodations, vocational training, access to community colleges and universities with aides, and supports that allow our adult children to continue to learn and contribute. The list is longer for some families dealing with medical issues or extreme behavioral issues. By default, we’ve become activists and advocates by no choice of our own.

It can be an exhausting introduction -- in the first few years following a diagnosis -- for the support, guidance, and understanding is scarce. Autism still requires a lot of reading, research, funding, management, and self-enquiry. As life evolves and our children mature, we move beyond that “crisis” phase. We have read and learned, and we learn to love and accept our children as they are. We even learn to accept the prejudice and discrimination that becomes a part of our children's lives and we feel and live with it too. We work tediously and patiently, hoping that attitudes will change, services will become better and our children will be included in all facets of society.

We hope that our partners will continue the journey along with us. I say this because it's fairly typical that there is one parent doing more of the advocacy, work, and research than the other as part of the division of labor. This of course is not always the case, but for the sake of argument and statistics, it is usually the mother who takes on the bulk of such work.

Mothers are especially blamed because it is expected that we are supposed to be better caregivers. “If only the child was 'normal,' then the mother would be able to attend to her husband more often," is but one of the comments I heard during my separation -- speeding me through a time warp to 1950. Blaming the mother for the failed marriage is an old idea -- we’re either as cold-as-ice Bettelheim-Refrigerator-Mothers, or we are terrible wives.

If the learning curve about autism is not shared, the divide can start here. Or it can start when the child doesn't run up to daddy when he walks through the door at the end of the day. The mother feels guilty that she has done something wrong. Maybe dad feels rejected. Is this the cause for divorce? Or is it that the spouses already do not have an effective communication and commitment in place? Is one partner less committed to the marriage to begin with? Maybe someone read that autism causes divorce and the message deteriorates the confidence and strength we actually need in our relationships? These are but some of the questions that need to be asked prior to assuming that autism is the reason for higher divorce rates.

I've spoken to some single moms of more than one autistic child. I know it doesn't have to do with the cause of divorce, but becoming single sure follows it. Single parenting of autistic children is a topic that needs a lot of discussion, according to my Facebook  and blog readers. The single mothers I've spoken with claim that all their time is dedicated to autism -- from management to finding subsidy, services, respite and dealing with the schools. There are single mothers struggling and in need. I suggest that these are the caregivers who should be at the top of the list for such financial and respite support -- not only do children need it, but parents do as well. This of course also applies to single dads. When single, extra time is committed in order to accomplish the tasks that were once shared. Lack of understanding and support, unlike other disabilities, does effect the shape and nature of our lives. It doesn't necessarily make it worse. It can, in fact, make it richer, even if it's challenging.

It's ironic that, having seen so many women of typical children get caught up in their motherhood roles, that mothers of autistic children get blamed for failed marriages because we get so involved in our “autistic” children’s lives. In the beginning when I wrote reams about autism on my blog, I was criticized for being too involved one moment, only to receive another message from another source that I needed to do more for my autistic son.

Children have been vulnerable targets for generations. Add the stigma around autism and disability, and the autistic child is spotlighted in this divorce speculation. Instead of studying the ingredients of successful marriages and families with autistic people in them such as attitude, family communication, compatibility, the purported correlation between higher divorce rates in autistic families simply bypasses these considerations.

A 2010 study debunks the incorrect 80 percent divorce rate and some of the assumptions that accompany that myth. Dr. Bruce Freedman of the Kennedy Krieger Institute found that a child’s autism “had no effect on the family structure.” In fact, he found that 64 percent of children with autism belong to a family with two married biological or adoptive parents compared to 65 per cent of children who do not have ASD. Freedman’s study acknowledges that parenting an autistic child may be more stressful and it may put pressure on the marriage, which he found in past studies.

Yet, Freedman's team's analysis of a 2007 National Survey of Children’s Health data showed that other factors can contribute to divorce, “such as having a child with particularly challenging behaviors with and without autism [emphasis mine]. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point.”

Freedman wishes to conduct more longitudinal studies to find out how relationships can survive such stressors and what factors may enable the successful marriage. Alison Singer, founder of The Autism Science Foundation, agrees that it would be helpful to find the “net stress reducers,” for families, noting also that the 80 percent divorce rate myth may have added to our stress as parents and marriage partners.

It might help to add here that Canadian researcher Lonnie Zwaigenbaum in his paper A Qualitative Investigation of Changes in the Belief Systems of Families of Children With Autism or Down Syndrome (Child: Care, Health and Development, 2006,32: 353-369) concluded that families with autistic and Down syndrome children resulted in a reconstruction of values, expectations, and actually added to a sense of overall happiness and joy. His team noted that most families believed that their children added to their quality of life in that the way in which they regarded their lives were improved. I will concur. Having an autistic child, even with the challenges, has made me more patient and appreciative. My son Adam has been the most profound teacher in helping me see not only the realities of life, but in living with them to the best possible degree. While I was married he brought me joy. When I became separated, he reminded me, when I needed it the most, of my values, commitment and the importance of a healthy attitude.

Still, after grappling with the divorce-rate myth immediately after separation (which, by the way, made me only feel worse), I thought it really important to discover why so many people believe that families with autistic and other special needs children are more vulnerable to divorce. I also became interested in the underlying fears that may prohibit some people from believing that future relationships for autistic children are possible. Again, as I walk in the shoes, I know that parents are afraid of new potential partners being interested in a relationship where there is an autistic child. Parents believe they are not attractive as prospective partners. We also worry about whether our children will be safe and accepted. When people believe that autistic people are incapable of affection, violent (among many of the generalities), it is easy to see why there is concern.

Among some of the reasons why we believe divorce and relationships are so complicated is because we believe we suffer more because we perceive that we devote much more time to the autistic child than the neurotypical child. We forget to consider the issues belonging to typical children that can also strain marriages. In my current relationship, I overheard my partner claiming how much more delightful my son is compared to some of the typical children he's encountered. The reality is, children are children and the outcome of them all is uncertain.

Yes, autistic children, and their parents, need more support in a world that doesn’t value them as they are. I also see this changing. I see more acceptance as the years pass. I have more understanding and patience for others who have not been in this as long as I have, and that really does make things a little easier. A change in attitude has effected a lot of positivity in our lives. I've always viewed my son Adam as a joy in my life and I've seen him become a joy in the lives of others. The time I devote to him is worth it.

Overall, though, divorce is not easy, whether you have an autistic child or not. Though my life has taken more turns than I expected, I have learned to accept them and to make a life for Adam and myself that fits us. We must fashion our uncommon arrangements, whatever they may be, and forget the traditions, systems, and beliefs that can influence the way we function and even make us sick. We must create our own ways through life to find contentment.

If you want to be married or in any kind of committed arrangement, and you have autistic children, perhaps my best piece of advice is to just stop listening to the messages about how hard life is with autistic children, or how you are supposed to be married or be a family in the first place. Don't let anyone tell you how to be a family or that your autistic child must be normal to be valued. If you have remained together, lovely. Keep looking to each other, and cry, laugh, and grow together.

I hope you continue to live … happily ever after.

----

A version of this essay was originally published at www.esteeklar.com.

Friday, August 13, 2010

Getting to Know Your New Neighborhood: Reaching Out and Building a Network

Susan Walton
www.discoveringfamilyfun.com


It’s important to realize that you cannot cope with this new element of your life alone. And you shouldn’t try. There is help out there for you, for your child, and for your family, and you should take advantage of it. In addition to uncovering the services and agencies that offer assistance, you want to find and keep the friends and professionals who will sustain you. And conversely, you may need to minimize your exposure to the people, feelings, and obstacles that drag you down.

First and foremost, your best allies are other parents who have a child on the spectrum. You can find existing parent networks through local support groups, parent clubs, assistance agencies, and online forums like Yahoo Groups. Joining those groups is a great way to get started. To find out if there is a Yahoo Group for parents of children with autism in your area, go to the Yahoo Groups home page and search using keywords that describe your locality along with the terms autism or ASD.

You will also need to build a more personal network. You shouldn’t try to learn everything by yourself; that would waste valuable time. Other people already know what you need to know. They know where to find the best speech therapists, which local preschools welcome special needs kids and have the most caring teachers, and how to get the best results with your caseworker. When you connect with local parents who can share that kind of information, chances are that you’ll find they become a safety net of emotional support as well.

Putting Your Best Foot Forward

Developing your own network may mean overcoming a sense of personal shyness, which can be difficult. If you are reserved about making contact with people you don’t know or feel reticent about impinging on other people’s privacy, the first stage of building a network can be the hardest part. You have to reach out more than you might otherwise, asking sometimes-personal questions, talking to people sitting beside you in waiting rooms, and cold-calling references. If that falls outside your usual personality style, steel yourself to do it for your child. If you are more comfortable communicating in writing, you can use email as often as possible, but there is no substitute for the kind of parent-to-parent conversations that often reveal more than you’ll learn through correspondence or official channels. 

Some of your best contacts can be the people sitting in waiting rooms with you. You already have something in common with them, and you know something about each other if you are reading outdated magazines together. Try to strike up a conversation and compare notes on the provider or clinic you are there to visit. You can get a feeling for the other person’s opinions: Are they compatible with yours? Have they noticed things that you missed? Do you admire their apparent confidence; their ability to seem relaxed? This could be a sign that they have been getting services for their child longer than you have. They may have good information to share, so put aside that aging copy of People magazine and trade stories. Are they as new to their diagnosis as you are to yours? Then they will understand what you are going through better than anyone else on the planet. Don’t unload all your emotions, but make a connection. Try to keep your tears in check and remind yourself that their pain may be as fresh as yours. You can help each other most if you use your time to talk rather than weep.

I have friends that I met sitting in waiting rooms during the first weeks following my son’s diagnosis. When we looked at each other back then, our eyes told our whole story. We were all sick at heart and desperately trying to make sense of the news and figure out what to do. And it is amazing how strong we look to each other now. When we run into each other or find time for a coffee date, we see entirely different people looking back. Even as we are share news about the latest round of problems in our lives, the difference is amazing. We are in control and things are moving forward every day. We see battle-scarred but victorious soldiers in each other. These are valuable friends indeed.

Building a strong personal network of smart and experienced parents means taking good care of the network over time. You need to keep your eye on being a friend as well as using your friends. You’ll find that no one is as sympathetic to the problems of your world as another parent who has been there. But you cannot forget to listen, too. And when you discover a great therapist or a wonderful babysitter, share the wealth!

And again, as raw as your pain may be, try to keep it in check when you meet new people. All too often, it is clear which parents are collecting themselves and trying to move forward and which are so overcome with grief that they are not ready to participate. The kind of parents you most want to know will be reading signals and gravitating towards others who will be the most positive contacts for them.  Try as best you can to be one of the ones who can offer help as well as accept it. Put your brave face on and save personal meltdowns for close friends and family.

The Art of Self-Protection

Your child’s diagnosis may change your relationship with your existing friends, and it is something you cannot prepare for or prevent. Anyone who has been through a difficult time will tell you that they discovered who their friends were and just how much they could be counted on. This situation is no different. Some people are uncomfortable around bad news and “don’t know what to say.” Others want to take the easy road in life and prefer to spend their time with peers whose kids are easier playmates. These are people you can let go of easily.

There are also those who can be unintentionally insensitive to what you are going through. They may mean well, but they do not understand the depth of your pain. These are friendships you may need to put on hold and reexamine when you feel stronger. If it is too painful to be around a friend who constantly gripes about how little Jimmy won’t pick up his toys or eat his vegetables (at a time when you are wishing your little one would just call you Mommy) don’t put yourself through it. Friends who invariably cause pain can drag you down. Protect yourself and place friendships on hold if they are hurting your mental health. Your own peace of mind is important during this time. Your family needs you, and they need you at your strongest. You can and should avoid putting yourself in situations that erode your confidence or your ability to carry on. Later, when you are ready, you can reopen those doors or not, as you prefer.

Sometime during the first year after my son’s diagnosis I took stock and realized that there were two kinds of conversations going on all too frequently. They were weighing me down like rocks. With some friends I was able to redirect to new topics, but I also needed to prune my network to avoid people who could not stop repeating the same fruitless conversations over and over.

The first was the “Why?” conversation, and you may know it. Was it the vaccines? Was it a preservative in the vaccines? Is autism environmental, hereditary, geographical? Does it run in my family or my husband’s? Is it because I had fertility treatments, drank from a bad water supply? And so on.

For a time, this topic was at the forefront of my mind as well, and I engaged in it with equal enthusiasm. But I began to see how circular it was. The difficult fact is that at this time, no one knows why children develop autism. All of the time I spent discussing it and comparing my own variables with others was time wasted. Instead of feeling ventilated, the topic only increased my sense of frustration and agony.

The other kind of conversation that I had to stop was the frequent reliving of the grief. When you get news of a lifelong disability like autism, most people traverse the traditional stages: Denial, Anger, Bargaining, Depression, and Acceptance. It is a loss, a very real loss, of the future you wanted for your child. But deciding how, with whom, and when to share those feelings is a different equation for people. I met some wonderful parents who simply could not carry on any other kind of conversation with the intensity they put into talking about how awful it was that this had happened to their family. I felt sympathetic, but it was all I could do to cope with my own pain. I began to shy away from weepy, angry, or depressed people who were focused only of their pain and their problems. I began to seek out parents who were either containing their feelings or moving past them. We developed bonds that allowed us to share our pain in more appropriate doses over time, and those bonds outlasted the freshness of the pain.

The pierce of my own wounds eased when I focused on “what next” instead of “where did I go wrong?” or “why us?” Moving forward should become the most important item on your list, and for a time you may have to be a little ruthless in how you choose your company. Even though you may be lying in bed at night wondering how this happened to you (was it the genes from your husband’s weird uncle or your pregnancy craving for corn dogs?), you will get past that. The bottom line is that it has happened. You need a group of close friends or family to talk to about your pain. Try not to make it a day-to-day obsession or to burden new acquaintances with it.

Collecting Your “A” Team

Aside from your personal friends, there is another core group of people that you will assemble over the next year, and they may differ from the kinds of people you’ve had in your life until now. But your team will be composed of people and professionals who will be important to your family’s continuing contentment.
The Core Team
  • Pediatrician. Your child’s medical doctor.
  • Child Psychologist. An autism expert who can make a diagnosis and recommendations for appropriate treatment.
  • Speech Therapist. Also known as an SLP or speech and language pathologist, this person will help your child learn to understand and use words.
  • Occupational Therapist. A therapist who uses creative activity to treat physical and sensory issues.
  • In-Home Specialist. A therapist who works in the home (or sometimes at school) to develop positive behavior techniques and life skills for children with autism.
You will assemble a group of professionals to rely on for therapy and medical services. Each member will have a particular role to fill, and his or her knowledge will contribute to the well-being and education of your child. Generally speaking (and this may differ from child to child, just as specific needs will differ from child to child) a core team for a child on the spectrum will involve a pediatrician, a child psychologist, a speech therapist, an occupational therapist, and a home-therapy specialist (see box). With time, and depending on your child’s issues, you may add others, such as a neurologist, a developmental pediatrician, a physical therapist, a play therapist, specialized doctors or nutritionists, or junior therapists and aides.

As you begin setting up and carrying out service relationships with therapists, remember that these professionals may go on to become a vital part of your child’s learning as time goes on. They have a unique combination of professional expertise, direct knowledge of your child, and a detached perspective that no one else can provide. Over time you will get a sense of which providers are caring and dedicated versus those who are less concerned. You may get to know a great many people before you settle in with a core team, and even then you’ll find that changes happen as your needs, your school district requirements, and other people’s lives shift around you.

Parents ask, “Will this ever calm down? Will I ever be able to just relax?” The answer is twofold: Yes, things will settle down as your child’s needs become clearer and therefore easier to address. Your team will become more familiar to your family and the schedule will settle in. But you will probably never find that you can “just relax” when it comes to managing a team. Circumstances continually change, and you’ll always need to be involved to make sure your child’s therapy adjusts as his needs develop over time.

Getting to the Know the Pros

Cultivate relationships with the professional people you’d like to have as trusted advisers. That doesn’t mean you should rush the fences and try to create friendships with the professionals on your team, because that wouldn’t be in your child’s best interests. You want these people to be focused on your child in their professional capacities and to be able to advise you about his needs. Frankly, you don’t want to know about their personal problems any more than they want to hear about yours. Maintaining appropriate boundaries can be challenging, especially in the early days when you need these people so much and they seem to understand what you are facing better than so many other people in your life. But it is important to maintain the professional aspect of the relationship to keep the services they provide at their most valuable.

With that in mind, assist as they develop a bond with your child and encourage them to care. For that to happen you’ll have to provide important input. Respect and appropriate professional behavior tops the list. When your life is in turmoil it can seem natural for everyone around you to make allowances. But if that continues for long it will impact every relationship negatively. Always remember that for professional people, their time is their livelihood. Treat it respectfully and be careful never to abuse it.

The difficult part of these new professional relationships that center on your child is finding balance between respecting the opinions of others even as you maintain the ability to assert your own opinions. It is critical to remember that you know your child best. But these professionals may know autism and therapy practices that are new or strange to you. 

Children with autism will behave differently with different people. They also may behave differently in different settings and under different sets of expectations. While a therapist may know a particular aspect of your child’s personality, you know many, entirely different sides of your child with a depth they will never match. That makes you the most important expert on your team. You want to be treated as such and to behave that way, too. You should express your opinions and feel able to make decisions that contradict professional advice if you believe it is the best thing to do.
Tips For Building Strong Professional Relationships 
  • Never be late for appointments. Always call if you are unavoidably detained. Always cancel if you cannot attend. These are golden, unbreakable rules.
  • If you need extra time to talk about your child, say so at the beginning of an appointment so they can break early. Don’t monopolize the therapist at the end if your time is up.
  • Respect their opinions in conversation.
  • Let them know you value their work with your child.
  • Remember to report back when you see progress at home that you can connect with their work.
  • Support them by letting them know that you’d like to know about what they are doing and how you can carry over techniques at home. But be realistic about what you can do and don’t over-promise.
When you assert your own opinion over professional advice, do it respectfully, explaining why you hold the opinion you do, and including appropriate members of your team in decisions whenever possible. The team is there to help and support your efforts to teach your child. Each of them is important, but any therapist that does not treat you with respect or fails to consider your opinions is not a team member you want to keep.

If you find that a therapist treats you with condescension, or devalues you as “just the parent,” then you are probably not working with the right provider. How professionals interact with you is as important a factor in developing a successful relationship as how they relate to your child. Often parents try to work around bad chemistry, thinking, “Even though I think she’s awful, my little boy loves her.” But it is usually a matter of time before the aggravation outweighs the benefit. It can be frustrating to wait a long time to get in with a professional only to find the chemistry is terrible. But it happens. You’ll have to decide whether you can continue to see the provider during the time it takes to find a replacement, or if you must discontinue the relationship right away. Take stock by asking yourself if your child is benefiting from the time spent. If the answer is no, it’s easy, you know your next move. If the answer is somewhere in between yes and no, (he’s doing all right, but not nearly as well as he could be) then factor in other issues like how the appointment works with your schedule, how far the office is from home, or how unpleasant it is for you to go. Tally it up as impartially as possible and make a call. And refer always to Rule One: No intervention at all is better than bad intervention.

There may be times it is worthwhile to discuss discontent or concerns with a provider, but don’t worry if you don’t feel up to it. If a problem seems like a misunderstanding or one bad day, you can try to repair it or get past it. But if it is a general attitude that you don’t care for or a constant feeling of friction, it’s time to look for options in the field. Sometimes relationships don’t work even with good intentions on both sides. You have enough problems and challenges in your life at this time. Don’t let relationships (supposedly with people who are there to help) turn into a substantial part of the burden you bear.

As you meet therapists and discover your own personality preferences, watch your child’s reactions too. Most kids have a “type” and respond well to a certain profile. Knowing that type will be hugely helpful as you look for providers and ask around for advice as to who will work well on your team. Watch to see: Does your child respond best to “big” personalities, people who are entertaining and silly and put on a show? Or is this kind of person scary and unpredictable for him? Does he prefer a calm, soothing person who makes him feel safe? Perhaps he tends to warm up to women more than men, or acknowledges the authority of older therapists but tends to ignore younger people. My son could tell a tentative or inexperienced therapist a mile away and he tended to take wild advantage of their lack of confidence. I had to be careful to avoid tentative personalities in roles that required occasional firmness. These are observations that you should note as you are exposed to a variety of styles and personalities.

Your child is accustomed to you and your style, as well as your partner and other home relationships which have figured largely in his life up to now. He may seek adults who relate in similar ways to help him make sense of relationships as a whole. This tendency can help you to find people compatible with you both. But don’t rule out a particular type without giving it a try. In general I found that my son responded best to big personalities, people who were fun and vivacious. It was a tremendous surprise when we met our best speech therapist, a quiet, composed woman who communicated calm in her tone and manner. Rather than being under-stimulated or bored by her style, my son responded by matching her calm and paying attention to her every word. She stayed within his receptive language boundaries and never overwhelmed him. It was wonderful to see the inception of what became a long and successful relationship. We didn’t go ahead and fill his days with calm, quiet therapists, but the time he spent with this speech therapist was unique and a welcome change.

In addition to professionals, you also need to be building your “autism advice network,” a group of friends and support people who have more knowledge than you do. It is hugely helpful to be able to bounce ideas and trade resources with these contacts. Your autism advice network may contain members of your core professional team, but often it does not. It may contain certain personal friends, but not always. The autism advice network should be specifically composed of people who know about special education or autism. Often as not, they have a child on the spectrum themselves. These are parents who are moving confidently in the world you are joining. They have been building and managing a team, learning the ropes, and coping with autism longer than you have. Their expertise and advice will be critical. These are your waiting room pals, your Yahoo Groups listmates, and other special education contacts you meet along the way.

Last but not least, you will find yourself dealing with a host of new bureaucrats. There will be agency employees, school district officials, and possibly social workers who control funding and entrance to programs for individuals with disabilities in your area. One issue that new parents cannot help but feel is the sudden change in the family’s privacy. In order to gain access to the services and support your child requires, you have to interact with a variety of people about your child’s needs and your family’s circumstances. You are asked questions that seem personal and sometimes even rude. You are queried about the level of support you get from your extended family, the income you make, the way you live. I wish I could offer good advice for the emotional difficulty this can create. But it is an unpleasant feeling and no one likes it.

Listening to strangers talk about your child and his or her deficits dispassionately can also be awful. If the people involved are untrained or insensitive, it can take every ounce of patience to maintain a pleasant facade. Some of these situations require balance and extreme patience. It might be necessary to listen to a certain amount of such talk in meetings and to endure the burn when a disinterested voice enumerates your baby’s difficulties. But if you feel participants have gone from dispassionate to disdainful, you don’t need to continue to endure. You are not required to submit to cruelty and anyone doling it out should be confronted, reported, or dismissed, as you see fit. If you meet with such a bureaucrat, temper your reaction by sleeping on things overnight. If you wake feeling all the more convinced that your family’s feelings have been misused, write a letter to the person’s supervisor and copy another higher up supervisor if possible. Take whatever action seems appropriate and recover your dignity. Even though we are constantly asked to submit to a heartless system, sometimes the best thing you can do for your child and for yourself is to be strong and insist on compassionate treatment. Advocacy for your child means balance: Knowing when to submit and when to speak up. Discretion can be the better part of valor, but dignity is non-negotiable.

Jumping through hoops is part of working the system in your child’s favor. Most people want amicable relationships with the contacts they expect to deal with regularly. But reality can also be that the squeaky wheel gets the grease. Even though you want a pleasant relationship, that doesn’t mean that you need to be nice to the point of pain. If your own ability to endure and be patient is leading you to lose out on services or wait indefinitely for answers, go ahead and lose your cool! Even though an agreeable relationship is on your priority list, it falls well below getting your child what he needs. If you have to make a choice between being liked and getting help for your child, I wouldn’t hesitate to suggest sacrificing popularity.

A common tactic with agencies that are strapped for funding is to play the Delay Game. Not a fun game at all! But every day that they don’t answer your phone call is another day they don’t have to pay for service. Every confusing answer that leads to another round of phone calls buys them more time. Some parents will get wise to this trick and hold the agency’s feet to the fire more quickly. Others become victimized by the tactic and are strung along for months before getting some of what they need. Be in the savvy group. Never end a phone conversation without asking when the person will get back to you with the information you need or with the next step. If they refuse to be specific, let them know you will call in a day or two to see how they are doing. The bottom line is that you may need to get pesky and go beyond persistence to get past barriers. But you can do it. It is for your child.

Thursday, August 12, 2010

The Crucial String

Liane Kupferberg Carter
http://www.huffingtonpost.com/liane-kupferberg-carter

My husband and I had grown increasingly uneasy about our second child Mickey. Though a warm, engaging baby,  he showed no interest in playing Peekaboo, How Big is the Baby, or waving bye-bye.  At monthly visits the pediatrician assured us all was well. But by 18 months, Mickey had only three words, which is why fourteen years ago we finally found ourselves sitting in a cubicle at a major teaching hospital. A team of unsmiling experts spent two hours poking, prodding, and measuring our son, asking him to draw a straight line, stack cubes, put pegs in boards. I perched forward to catch the doctor's words more fully, hoping to hear how adorable, how promising my child was. Instead, she said:

"Don't expect higher education for your son."

It felt as if we were looking down an endless, dark tunnel. Our radiant little boy had just been diagnosed with an autistic spectrum disorder. How could she make such a prediction about a child not yet two? we asked. There was no doubt, she said, that he was "special." A puzzling word. For if he was special, did that make our other, older son Jonathan ordinary?

Just as you go through predictable stages of grief and recovery when someone you love dies, so too, learning to scale back your expectations and dreams for your child is an equally painful process. We began the endless rounds of therapy: speech, occupational therapy, sensory integration, physical therapy, vision therapy, auditory integration therapy, behavioral therapy, play therapy, dietary and biomedical interventions. At first my mood was only as good as the last therapy session had gone. It was a lonely time, as I stumbled around in an unlit room of my dark imagination. I felt isolated by my anguish, as friends and relatives rushed to dismiss my fears. "Einstein didn't talk till he was four. Give him time and he'll snap out of it. Boys talk later. Don't compare your children."

In the next year and a half, Mickey learned to recognize letters and numbers, and showed a keen interest in reading signs and license plates. I was waiting for a "Miracle Worker" moment, a breakthrough where he would suddenly begin speaking in paragraphs. Naively, I still assumed that with enough intervention he'd be fine by the time he reached kindergarten. One night at bedtime, he offered a first full sentence: "Mommy, snuggle me," and my eyes filled.

Disability seeps into all the cracks, the corners, of one's life. It becomes the emotional center of the family. Sometimes I felt as if other, "normal" families were feasting in a great restaurant, while the four of us were standing outside, noses pressed to the glass. Birthday parties for other children were sometimes unbearable, as my child, so clearly different, was unable to bowl, do gymnastics, or participate in any other activity. People often stared at him. Equally painful were Mickey's birthday celebrations; I couldn't help remembering just how much his older brother Jonathan had been able to do at a comparable age.

I was adrift in a foreign country, without a guidebook, and I didn't know anyone else who lived there. Those first few years with Mickey were like living with someone from another culture, and it was our job to teach him the ways of our world. Slowly, we learned the language, as I dogged my son's therapists with questions and requests for more information and articles, reading voraciously, going to workshops and conferences, acquiring a new vocabulary.

You adapt. Mickey was impulsive, and would often dart away in public or dash out of the house; we put a special lock on the front door. He frequently dumped every book and toy from his shelves; we stripped his room to a minimum of play materials. Loud noises -- even the whir of elevators -- disturbed him so much he would cover his ears and hum; we avoided crowds and learned to take the stairs.

And yet, for all that he could not yet do, there was so much about him that was intact. He was unfailingly sweet, carrying his collection of Puzzle Place dolls everywhere, hugging and kissing them, feeding them pretend food. He would line them up under the bed covers, whispering "ssh, take a nap."  Given the depth of his issues, his affect, his warmth and his sheer vibrancy seemed extraordinary. 

The summer before kindergarten, Mickey lost his first tooth. We hadn't even known it was loose, because he still lacked the words to tell us. It was a bittersweet milestone. I remembered vividly the flush of excitement when his brother Jonathan lost his first tooth. Though Mickey seemed pleased to show off the gap in his teeth, and we cheered for him, there was no elaborate celebration this time.  The tooth fairy was too abstract for him.

The age of five was also the magic cut-off point I'd always imagined when all would be well. But the first day of kindergarten, I stood in a huddle with the other mothers and watched through the window of the special ed classroom as Mickey lay on the floor and said repeatedly, "I go home." But in the next year, he learned to follow classroom rules, and began to read. That year, when he told us his first knock-knock joke, we celebrated.

As the years have passed, I have learned to wear emotional blinders. I stay tightly focused on Mickey, celebrating every change I see. I try to tune out what other, neurotypical kids his age are doing, because the gap is still too painful. Mostly, I try not to compare him with his brother Jonathan, an excellent student who is athletic, funny and well-liked. Their trajectories are so different. It was hardest when Mickey was a toddler; if I did not remember every one of Jonathan's developmental milestones, there they all were, lovingly chronicled -- by me -- in his baby book. Comparing the boys is sometimes tempting, but dangerous. I must hold separate, realistic expectations for each.

Most support comes, not surprisingly, from other parents of children with special needs. When I finally connected with them after those first hard years, it felt as if I could take a deep breath after holding it too long. Today we talk with bottled eagerness, like war veterans sharing their fox hole experiences. And though each of our tours of duty is different, we all long for our discharge orders.

How do you do it? I am often asked. I give the same answer each time. I wasn't given a choice. I just do it, one foot after the other. I have to be his advocate, because as wonderful as the therapists and teachers are, they go home every night. We are his ultimate teachers, the ones who are in it for the long haul. There's nothing particularly noble about it. We do it because it has to be done.

Acceptance doesn't mean giving up, and it isn't a constant state. Grief and anger still rear up unexpectedly. I still get tired of the relentless effort, the struggle for normalcy, the endless round of therapies and school meetings and fights with the insurance companies. This process of healing is a destination without an arrival. There is no cure, no magic bullet. Joy and grief are joined in lock-step.

Ultimately, what buoys our family is hope. When I look at this child, I do not see "autism." I see my child: an animated, endearing, and handsome fifteen year old with a mischievous sense of humor, who despite the early dire predictions, has learned to speak and read and do math. Parenting this trusting, gentle boy has deepened me immeasurably. But would I trade in my hard earned equanimity and expertise if someone could magically make his autism go away tomorrow?

In a heartbeat.

A few years ago, I heard a story that changed the way I framed my feelings about having a child with a disability. Itzak Perlman was giving a concert. He made his way on crutches to the stage, seated himself, and took up his violin. He began to play, when suddenly a string snapped. Perlman looked around, seeming to measure the length of the stage, how far he would have to go on crutches to fetch a new string, and then seemed to decide that he would do without it. He lifted his violin and began to play, and even without that string, this man with a physical disability not only played; he played beautifully.

This is what it is like to have a disabled child. It feels as if you've lost a crucial string. And then, painstakingly, you must learn to play the instrument you've been given. Softly, differently, not playing the music you'd intended, but making music nonetheless.