Wanted: Special Needs Parent Role Models

One thing they don’t tell you when you become the parent of a child with special needs is that a good role model will keep you afloat.

 

(not Kathy)

(not Kathy)


Mine was Kathy. She  was the first parent of a child with special needs that I connected with. Her son John and my son Matthew were in the kindergarten together in a special day class. John, I learned, had cerebral palsy. Kathy had a bemused smile on her face when she told me this. I wondered what that was all about, but it made me feel less anxious about my situation. Matthew was developmentally delayed, and I was in the process of helping him catch up, certain that this would be the only year that he’d need special education. OK, I wasn’t certain, but I was hopeful.

I was struck by how comfortable Kathy seemed in a room full of 5 and 6 year olds with developmental disabilities. She chased after her mischieveious son John cheerfully when he bolted away with a handful of cookies, maintaining an upbeat conversation the entire time. Seeing this woman looking positive and engaged rather than downbeat and bedraggled gave me hope. Looking back, I think meeting her was my first “Aha” moment special-mom-style. I was going to be OK.

Kathy doesn’t know this, but she was the role model that I needed to get me on the path toward acceptance. I’d like to pass the lessons that she taught me by example on to you:

 

Special Needs Parent Role Models:

  1. Offer words of encouragement to new parents of children with special needs—not “God will only give you as much as you can handle” or “The limit of human endurance has yet to be reached.” They know that newbies will hear  plenty of that down the road.“ Instead, they say “You seem like a great mom. I know you’re overwhelmed but once you find helpers, and a circle of support, things will improve. I have some names right here…”
  2.  Teach others how to relate to your child by showing them how they do it.
  3. Share resources freely.  These parents pull names and phone numbers out of the air, or from scraps of paper in their purse.
  4. Treat  helpers and their circle of support really really well, because they recognize that these folks are their lifeline and their family.
  5. Know that venting is good, and whining is bad. Period.
  6. Admit it when they are going through a particularly difficult phase with their child, and ask for help. Brainstorming is good. Special moms also like to share their expertise.
  7. After a good venting/brainstorming session, special parent role models take a deep breath and remember how hard it is to be their child. They give their child the admiration they deserve.
  8. If venting and brainstorming are not enough, special parents seek guidance from a professional. They find referrals from other special needs role models or from their physician.

Who is your role model, and what have they taught you?

Are you a role model, or one in training?

***

More on role models:

Why Autistic Students Need Autistic Role Models

Colin Meloy and Positive Autism Parent Role Modeling

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I’ll be your role model. Let me know if you have questions or need resources.

 

 

 

 

 

5 autism trends that I have noticed

 

1) The medical community is becoming a friendlier place for people with autism and other developmental disabilities. Some shining examples:

  • HealthMeet®: they aim to improve the health of people with intellectual and developmental disabilities (I/DD) through trainings for medical students and health professionals, community-based health assessments for individuals with I/DD, data collection and analysis including longitudinal health outcomes for people with I/DD, comprehensive information and referral, and a public awareness campaign. Read more about them HERE.
  • UCSF’s Developmental Disabilities Conference for Health Professionals 

This is an annual event, thanks to a grant from the Special Hope Foundation, where the medical community gathers to learn about healthcare for people with special needs.

2) Companies are beginning are beginning to understand that adults on the autism spectrum have strengths and abilities that make them valuable employees.The Autism Speaks Employment Tool Kit is here! Read about it HERE.

3) Autism Awareness (in my opinion) is morphing into autism acceptance. Read why I think so by reading the following stories:

4) It is not a perfect world. Many self-advocates feel misrepresented. Read Zoe Gross’s perspective HERE. This month The Thinking Person’s Guide to Autism is also deconstructing the meaning of autism acceptance and highlighting the voices of individuals on the autism spectrum. Read their April series HERE.

5) Parents are helping parents and siblings are also weighing in, more than ever. Read their stories of encouragement in the recently released Chicken Soup for the Soul: Raising Kids on the Spectrum: 101 Inspirational Stories for Parents of Children with Autism and Asperger’s. I was honored to be a part of this collection.

Take a look, also, at the blogs listed in the in the sidebar on the right—->

What trends have you noticed? Which would you like to see more of?

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Three good books I like about autism. OK the first one I am partial to. More recommendations coming soon. Click images to order.
Book Cover

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Love, relationships and people with developmental disabilities: a valentine story


For the past 15 years, Donald and Bonita have been meeting each other every morning at The Arc San Francisco.

 

Valentines Donald and Bonita

 

Bonita makes sure Donald has his glasses and bus pass before he goes off to work at his custodian job downtown. Donald says he likes getting a paycheck so he can take Bonita to lunch.

The couple meet back at The Arc at the end of the day and travel to their separate homes. Donald lives at home with his elderly mom; Bonita lives in a group home.

In a perfect world, they’d get to go home together, but that’s not how the world works for many individuals with developmental disabilities.  While employment, education, health care and other supports are public priorities, the affordable housing that would give Donald and Bonita a chance to live together is out of reach.

Still, their relationship endures.

For Donald and Bonita, The Arc is a lifeline, providing employmenteducationhealth care and a safety net of support.

The Arc San Francisco is a non-profit service and advocacy organization for adults with autism, Down syndrome, cerebral palsy, intellectual and developmental disabilities and their families living in San Francisco, Marin and San Mateo counties.

The Arc serves a varied group of over 550 clients who, despite their diverse backgrounds, ages and disabilities, are all similar in their desire to live a life of greater self-determination, dignity and quality, providing supports that enable people with developmental disabilities to maximize their potential, live meaningful lives and become integral members of the community.

“The capacity for people with developmental disabilities to live full, rich lives is often underestimated,” says The Arc San Francisco CEO Dr. Glenn Motola, “but love is found across the entire spectrum of  the human experience and includes us all, people with disabilities and people without disabilities.”

Bonita agrees.

“Donald makes me laugh and makes my worries go away.”

To learn more about The Arc of San Francisco, CLICK HERE.

***

Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

Read the first three chapters of my book HERE.

You’ll be hooked.

Autism:12 pieces of advice for parents of a newly diagnosed child.

By the time my son Matthew was given the official diagnosis of autism at age 5, I already knew. This was almost 22 years ago, and I had only heard the “A” word to describe what Matthew probably wasn’t. Back then, autism was not nearly as prevalent as it is today, and it seemed that nobody wanted to be the messenger. Once the diagnosis was confirmed, it was up to me to figure out who to turn to for help.

Matthew

Matthew around diagnosis time…

What a difference TWO decades make. Specialists are able to detect the symptoms of autism earlier and earlier, and while it is never the diagnosis that parents want to hear, there are so many resources available now from the very beginning.  Here is list of 11 crucial things to help you get started:

1) Allow yourself time to grieve. Don’t let anyone rain on your denial phase. I found that stage to be one of my most productive.

2) Susan Woolner, mother of three boys including twins with autism(I always listen to a mother of twins with autism) recommends Autism Speaks 100 day kit, and the Asperger Syndrome and High Functioning Autism Tool Kit-both were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.I wholeheartedly agree. Autism Speaks has one of the best resource guides ever.I’m also very impressed with myautismteam.com, a social network for parents of children with autism that has partnered with Autism Speaks. The Autism Society of America’s resource guide is also excellent. But one my most recommended resource guides comes from The Thinking Person’s Guide to Autism. 

Speaking of THE THINKING PERSON’S GUIDE TO AUTISM, spend some time with their blog, and check out their book. There you will find great info from smart people just like you that you can trust.

3) Meet other parents and build community with them. Also, seek out parents who are “veterans” in the ASD journey. The benefits of being with other people who “get it” cannot be explained in words.

4) Educate yourself on your state law and school district policies. You are the best advocate for your child. Remember that they are children first and that they just happen to have autism.

5) Don’t blame yourself or your spouse.

Me and my spouse. I don't really blame him...

Me and my spouse. I don’t really blame him…

6) Pick your battles. You already know that by now.

7) I am not an organized person, but I have learned that the best thing is to have some kind of a schedule each day so that your child knows what to expect. I am also not a tidy person, but have learned that clearing the clutter in the house helps. Think about how calm you feel when you walk into a staged home.

 

Not what my house looks like

Not what my house looks like

8) The internet can make you crazy! You will find a lot of support, but you can also find a lot of false promises.

9) Pray for patience. Patience helps a lot.

10) Even though you will occasionally feel like you’re losing your mind, do your best to keep your sense of humor. Autism itself is not funny but it DOES create some situations that are.

11) Don’t forget the other siblings. Move heaven and earth to give them the love and attention that they need.

Brothers

Brothers

12)”No matter the level of his or her challenges,” says’s Lindsey Nebeker, a pianist/songwriter and autism advocate who herself is on the autism spectrum, “your child has a place in this world. Your child has a voice.”

I am open to more pointers if you would like to share some.

One more thing. Need to vent? Want some help? Contact me here and I will do my best to help.

Read the first three chapters of Laura’s book here.

You will be hooked.

(don’t you love it when people talk about themselves in third person?)

 

Autism: Educate thy neighbor

It was a beautiful April afternoon in Lafayette. Matthew, who is now 26, was approaching his fourteenth birthday and painting with watercolors peacefully while his younger brothers Andy and John kicked the soccer ball around in our backyard. We had had our share of bumpy days lately, but this was not one of them.

The mail came, and in the midst of the catalogs and bills was an official-looking envelope addressed to Mr. and Mrs. Peter Shumaker that got my attention.

On letterhead from the offices of attorney Casper White, it read:

“I am writing you regarding the bicycle accident involving your son, Matthew, on March 8, 2002 (about a month before) blah, blah, blah, I am representing so-and-so who was injured in the accident, please contact me, etc.”

I walked into the kitchen where Matthew was painting and asked, “Did you have an accident on your bike?”

“Who told you?” Mathew replied calmly.

“Someone wrote me a letter about it. Were you hurt?”

“Not really.”

“Who else was in the accident?”

“A boy.”

Oh, my God.

“Was he hurt?”

“Probably.”

“Was he bleeding?”

“Pretty much.”

God help me.

“Matthew,” my voice quaking, “did an ambulance come?”

“I give up. I’m done talking about this.”

He resumed painting, at which point I lost it.

“Matthew! I need to know what happened! Where did this happen? Was there anyone there that you know? Did anyone ask you questions?”

Matthew’s lower lip quivered as he tapped his paintbrush nervously on the table. “Am I in trouble?”he whimpered.

I took a breath and said, “No, of course not. You just paint and we’ll talk about this later.”

I hugged him and he choked back a few sobs and continued painting.I went back to my bedroom and called the attorney, my eye on the blue bike in the backyard.

According to the attorney, his client and nine-year-old son were riding bikes at the middle school around the corner. Matthew crashed into the younger boy, stopped for a moment, then fled. The boy broke his leg. Badly. He would be in a wheelchair for six weeks. The family had no medical insurance.

“I understand your son has autism.

My mind raced to the conclusions made by the boy’s family, the attorney, and our community. This thirteen-year-old autistic boy is riding his bike without supervision, collides with and injures a child, and leaves the scene. His parents are negligent. He is a danger to those around him.

“He wants to ride his bike at the playground like any thirteen-year-old. I can’t watch him every second,” I would counter.

But I knew that Matthew couldn’t manage these kinds of situations like most thirteen-year-old boys, so I’d hired after-school helpers to take him for bike rides and other activities. Still,  Matthew was not supervised every second. I tried to keep track of him, but he snuck out regularly.

But this accident had happened weeks ago–How did the attorney get Matthew’s name and address?

“From a neighbor who didn’t want to be identified.”

To this day, I wonder which neighbor it was, and wish I’d been more approachable back then. But I was so overwhelmed, which is why Matthew was riding his bike unsupervised in the first place!

What I didn’t know was that my neighbors were curious about Matthew and about our family. They wanted to know “what the deal was”. They wanted to help (or at least to understand.)

Give your neighbors credit. They, too, might have messy lives. But if they know what you are facing, they’ll do there best to help you. If you don’t feel up to running around the neighborhood and explaining things face to face, start by printing up a little information sheet with some particulars about your child. You can start with this list of the basics:

1) Autism is a neurological disorder; not a disease. It is a broad spectrum disorder, meaning that people with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic.

2) All share deficits to some degree in three areas: social interaction, verbal and nonverbal communication, and repetitive behaviors or interests. In addition, many have unusual responses to sensory experiences, such as certain sounds or the way objects look.

3) “They” are not all alike. Individuals with autism have unique challenges, quirks, and interests. People with autism can be hard to figure out. Don’t be afraid to ask their parents or caretakers questions.

4) There is no proven cure for autism-yet. Autism is a lifelong diagnosis. That’s not to say that people with autism don’t improve, because many improve radically with treatment. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people.

5) No one is sure what causes autism. Theories range from  mercury in infant vaccines(a theory that has been hyped up by celebrities, not scientists who maintain there is NO link)to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.

Another great way to educate you neighbor is with THIS video and the following links

What’s it like to have autism?

Autism and the wandering problem

Autism and Law Enforcement

Tribute to nice friends

 

You might keep a few bottles of wine and boxes of chocolate on hand –just in case!

 

“This is not a book about a young man with a disability, but rather a story of love, adaptation, and acceptance.”

  Read First Three Chapters

A Regular Guy

http://t2.gstatic.com/images?q=tbn:u0EecGbNDgfM-M:http://www.safehome-ks.org/siteresources/data/images/amazon.logo.bb.1024.png http://scottking.info/Pics/barnes__noble_logo.jpg Kindle

or your favorite local bookstore.


Nervous Laughter

When I was eight years old, Uncle Russell came to visit. He was my mother’s cousin, but everyone called him Uncle Russell. He was twenty years old and had a severe case of cerebral palsy.

Russell was pigeon-toed as I had never seen before, causing his knees to face each other. He walked in a spastic, bouncing stumble. His hands were gnarled and bent at the wrist, fingers curled, in a way that my brother and I found impossible to imitate. His long neck was thick with muscles pulsating from the strain of holding his large, constantly moving head.

Despite his challenges, Russell always had a huge, improbable smile on his face. My brother Scott and I tried in vain not to laugh at him. Even my compassionate mother sometimes had to excuse herself to giggle in the kitchen with us.

“Laura, we’d better not laugh,” she said before going back to face poor Russell again. “God may give you one like Russell someday.”

Mom wasn’t superstitious, and I knew her warning was only meant to sober us enough to get our giggles under control.

Russell wore pointy red Keds and a baggy old cardigan sweater. His dark hair was greasy, and he smelled bad. I remember thinking that it would sure help if his parents dressed him nicely and cleaned him up a little. Looking back, I realize that his parents did the best they could-the shoes were probably the only ones that fit his feet; cardigans are easier to get on a spastic child than pullovers; and bathing a young man with cerebral palsy is a grueling job for aging parents beaten down by endless caretaking.

Through the years, there were others I couldn’t help but laugh at, like the twin brothers at a Christian summer camp when I was fourteen. One was normal and the other weird. The odd boy flapped his hands when he was happy; he’d rock back and forth and sing songs. My friend Ginny and I didn’t want to laugh at him, but we found it easier simply to avoid crossing his path so we wouldn’t blow it. One time his brother caught my self-conscious giggle and glared at me, deeply hurt. I’ll never forget it.

When I was in my twenties and living in San Francisco, I was introduced to a nice-looking guy at a Christmas party. As he stood up to shake my hand, I noticed there was something funny about his legs. He seemed like a great catch-educated, funny, well-dressed except for the bow tie. We sat down again and talked for a while. Eventually, he got my phone number. My excitement turned to dread when he got up to get us a drink. He walked like Uncle Russell. I stifled a nervous, embarrassed laugh and pretended to be laughing at a funny joke I had just heard when he got back with our drinks. Somehow I held it together for the rest of the evening.

He did call me for a date and I accepted. Before he arrived, I told myself that here was a terrific guy with a great attitude who had accomplished much despite his disability, and I should rise above my silliness, be a good person, have a great time. But when I opened the door to greet him and saw him bouncing up the stairs toward my apartment, bouquet of flowers shaking violently, I knew this would be our last date.

I called my mother the next day to share my date story. She didn’t laugh.

“I hope you were kind to him,” she said quietly. “It must be so hard for him. I’ll bet his mother worries.”

There was an awkward silence between us, and I felt like a superficial, spoiled brat. What could I say to redeem myself?

“If I had a baby with a problem, it would be hard, but I’d do fine. But I have a feeling my kids are going to be healthy,” I said.

“So do I,” said Mom. “So do I.”

A Trip to the Hardware Store

“Mom! I have something very important to tell you,” my eighteen-year-old son told me urgently. “We need to go to the hardware store.”

I took a deep breath. Another adventure with my autistic son was about to begin.

When we got to the store, Matthew rushed in and disappeared behind the shovels and the toilet seats. I followed, warily. He reappeared with the orange extension cord he’d had in mind.

“Mom, give me the money and let me buy this-like I’m a regular man.” His forehead was screwed up with intensity.

I handed him a twenty and told him to meet me outside.

I stood behind Matthew in line, clutching a bottle of Elmer’s glue I had grabbed. He wanted me to look like a regular woman, anonymous to him, shopping at Ace Hardware. I watched as Matthew put the extension cord on the counter and handed the saleslady the twenty-dollar bill.

She was Flo, an old-timer with a bouffant hairdo and painted-on eyebrows. I saw the two of them having a little conversation, and I could tell by the confused look on Flo’s face that she might need my help. But I held back anxiously to respect Matthew’s wishes.

After what seemed like an eternity, Matthew paid for the extension cord and stepped outside to wait for me as I marched up to Flo, placing the glue on the counter.

“See that guy?” she whispered. I glanced out the door and saw Matthew standing there with a self-satisfied look on his face. “He’s got mental problems!”

“What did he say?” I asked with a heavy heart.

“He walks up here with his extension cord, and he says, “˜Are rhododendrons poisonous to goats?’ And I says, “˜I don’t know.’ Then he just starts laughing and walks out with his extension cord!”

“He’s my son,” I confessed. “I should have explained when I came in. He’s has autism.”

“Autism? You mean like the Rain Man?” she asked, looking mortified.

“Well, sort of,” I replied. Best not to go into a big explanation right now. “He wanted me to let him buy something at the store like he was a regular guy.”

“I feel terrible!” Flo said. “But he must know he’s different.” Realizing that Matthew’s hopes, dreams, and lack of self-awareness would be too hard to explain, I shrugged and took my glue.

Flo had no idea how many times I had said to Matthew, “If you want to be treated like a regular guy, you’ve got to act like a regular guy!” or “Regular guys don’t talk about poisonous plants all the time!” Unfortunately, social awkwardness is wired into Matthew’s brain, and no amount of instruction or reasoning was going to change that.

I glanced at Matthew as we drove home, and I could tell by the strange smile on his face that he had moved on from his “regular man” frame of mind to the absurd.

“What would happen if Dad ate an oleander?” he asked, grinning crazily, and the lump that had been in my throat on and off since his birth returned.

Beginnings

 

I didn’t need to check my dog-eared copy of What to Expect When You’re Expecting to know that I was in labor. I had spent the day window-shopping in San Mateo, an upscale community twenty miles south of San Francisco where I lived with my husband Peter. I was proud of my Princess Diana-inspired maternity wardrobe, and on this day I was wearing the red-floral Laura Ashley dress with the ruffled shawl collar that tied in front, sailor-style.

It was 5 p.m., and I was in the bookstore two blocks from home when the first contraction gripped me. Right away, I could tell that my evenings in Lamaze class at our local hospital had been nothing but a social hour.

“Any day now!” sang the manager, patting my belly as I hurried from the store.

I made it home in a minute or two, smiling all the way, and called Peter. We were both so excited to become parents.

“They say with the first it takes awhile,” Peter said, but he could tell from the sound of my voice that I would be an exception. By the time he walked in the door at 6:30, the contractions were three minutes apart. We made it to the hospital at 7:15, and Matthew was born just after midnight, at 12:35. It was May 22, 1986, the happiest day of my life.

I can’t remember a time when I didn’t know that I wanted to be a mother. I grew up in a loving family with parents who treasured each other. In the beginning, I was the middle child, brother Scott two and a half years older, brother David a year younger. Every evening at five o’clock, the three of us sat on the brick steps of our brown-shingle home in Piedmont, across the bay from San Francisco, waiting for the 42 bus that brought our dad home from his work as a stockbroker in Oakland.

Dad greeted us with a laugh and a hug. Sometimes he’d surprise us with treasures from Chinatown, a few blocks from his office at Dean Witter, where he strolled at lunch: wooden snakes, mystery boxes, fortune cookies. My brothers and I waited in the living room while Mom and Dad had a drink in the kitchen, discussing the events of their day, and we were soothed by the sounds of them laughing and talking. After they had caught up, we were invited in for dinner at the kitchen table. My favorite time of the day followed the evening meal, when I snuggled on the sofa with my mother and we talked or read. Even when I was very small, my mother and I shared private jokes that cemented our bond, and I loved the feeling of our bodies shaking with laughter as we cuddled.

When I was five, my brother David drowned. He was just four years old. I remember standing helplessly on the dock of Clear Lake with my mother and brother Scott while my dad struggled to revive him.

The year that followed his death was quiet and strange. My mother was remote; my father’s smile disappeared. Scott and I didn’t understand the permanence of David’s absence, and we escaped to a world of our own, fantasizing about how David would reappear. One evening, six months after his death, my brother and I found our father crying in our living room, looking at a photograph of beautiful blond David with his clear blue eyes sparkling mischievously.

“Don’t worry, Dad,” I said, patting his arm. “He’ll be back.”

“No, Laura. He won’t.”

And we all wept together. It was the saddest day of my short life, but the day when the healing began for my parents.

Four years later, my father carried my baby sister up the brick steps of our home and put her in an infant seat on the kitchen table, where we all gazed at her sleeping. Carrie was three days old when we adopted her-and once again, we were a family of five. She did not replace David, but she completed our family.

For a nine-year-old girl, there is no more precious gift than a baby, and I relished her completely. After school and on weekends, I spent every moment with her, carrying her around, dressing her, singing to her. When family and friends came to visit the new baby, they had to pry her out of my arms, and they were quick to hand her back while I stood anxiously nearby. “You will be a great mother someday!” Mom told me.

I think I scared away a couple of good prospects when I was in my twenties, with the “Wants to Be a Mother!” stamp on my forehead. Mom told me gently to tone it down a bit, but she admitted that any guy who was afraid of me wasn’t the right one anyway.

I spotted Peter at the health club in San Francisco where we were both members. He was dating a friend of mine from college. Peter doesn’t remember being introduced to me by his then-girlfriend, but I remember our conversation when he walked away.

“He is so cute! Where did you meet him?” I asked my friend.

Cute was not the proper way to describe Peter. He was handsome, resembling a young Cary Grant with brown hair sweeping across his forehead, a patch of gray in the front. What made him cute was that he didn’t know how handsome he was. When I met him he was dressed in jeans and a red crewneck sweater.

“Isn’t he so East Coast?” my friend gushed. She was hooked. I wondered if he was as well.

When I heard that they had broken up, I found a way to strike up a conversation with him. I noticed an advertisement that he had posted at the gym. His roommate was getting married and he was looking for a new one. I called him and claimed to have a cousin who was moving to the area who might be interested. Our phone conversation turned flirtatious and concluded with a lunch date set for the following day.

Six months into our whirlwind romance, Peter admitted to me that the “Wants to Be a Mother!” sign had scared him at first but ended up being the thing he loved most about me. Peter was one of four kids and had grown up in a devoted family like mine. Nearly all of his family still lived in Connecticut, where he was raised. The old girlfriend was right-he was so East Coast.

Peter and I were married only eight months after we met, but nobody was surprised-the love and admiration we shared for one another was obvious.

When we were first married, we lived together in an apartment in the Pacific Heights neighborhood of San Francisco. During the week, we worked, met friends for drinks, and had dinner together, happily making plans for our future. The weekends were spent studying Gourmet magazine and having dinner parties with friends.

Shall we use the clay pot tonight or the wok?

Where did you put the eight-inch springform pan?

It’s next to the pasta machine in the pantry.

We had season tickets to the ballet; we entered bike and running races. Living in San Francisco was seductive and gave us a false sense of superiority. Looking back, I’m grateful for our self-indulgence. It was a gift to be naive and optimistic. Life would draw us back soon enough.

A baby after two years of marriage was our plan. Matthew beat us by three months.

He was beautiful. We were parents at last.

I was a mother.

How to be a Special Needs Mom-a tribute

Kathy Marshall is the first “special”mom that I connected with. Her son John and my son Matthew were in the kindergarten together in a special day class. John, I learned, had cerebral palsy. Kathy had a bemused smile on her face when she told me this. I wondered what that was all about, but it made me feel less anxious about my situation. Matthew was developmentally delayed, and I was in the process of helping him catch up, certain that this would be the only year that he’d need special education. OK, I wasn’t certain, but I was hopeful.

I was struck by how comfortable Kathy seemed in a room full of 5 and 6 year olds with developmental disabilities.She chased after her mischieveious son John cheerfully when he bolted away with a handful of cookies, maintaining an upbeat conversation the entire time. Seeing this woman looking positive and engaged rather than downbeat and bedraggled gave me hope. Looking back, I think meeting her was my first “Aha” moment special-mom-style. I was going to be OK.

Kathy doesn’t know this, but she was the role model that I needed to get me on the path toward acceptance. I’d like to pass the lessons that she taught me by example on to you:

 

HOW TO BE A SPECIAL NEEDS MOM

  1. Offer words of encouragement to new special moms—Not “God will only give you as much as you can handle” or “The limit of human endurance has yet to be reached.” They’ll hear that plenty down the road.“ Try “You seem like a great mom. I know you’re overwhelmed but once you find helpers, and a circle of support, things will improve. I have some names right here…”
  2.  Teach others how to relate to your child by showing them how you do it–Gracefully and with love.
  3. Share resources freely. Pull names and phone numbers out of your head, or from scraps of paper in your purse.
  4. Treat your helpers and circle of support really really well, because they are your lifeline and your family.
  5. Venting is good, and whining is bad. Period.
  6. Stay connected to parents of special kids, even when your children go in different directions.
  7. Admit it when you are going through a particularly difficult phase with your child, and ask for help. Brainstorming is good. Special moms like to share their expertise.
  8. After a good venting/brainstorming session, take a deep breath and remember how hard it is to be your child. Give them the admiration they deserve.
  9. If venting and brainstorming are not enough, seek guidance from a professional-one of your special mom friends might have a good referral that they can scribble on the back of a gum wrapper.
For the last several years, Matthew has called Kathy at least weekly. “Is he overcalling?” I’ve asked, and she says no. “I love my talks with Matthew.” John had become non-verbal, and she would have given anything to have such conversations with him.

***

Kathy’s son John passed away unexpectedly last week, most likely from a seizure in his sleep. All who knew him and who know his wonderful parents are devastated. John was only 24 years old. One of the first things Kathy told me after she told me the news was “I hope Matthew still calls me!”

He will, Kathy. Thank you for talking with him. And thank you for teaching me how to be a special mom.

***

Friends– Will you send a small donation to RES/SUCESS,  John’s incredible day program, to honor Kathy, and her beloved son’s memory?

 

Click HERE to learn more.

 

 

 

 

 

 

 

 

Preparing schools for the “new” definition of autism

You have heard the news, and if you are a parent of a child with high functioning autism or Asperger’s Syndrome, you are worried!

By May 2013, an autism diagnosis will likely be much harder to obtain than in the past.  The American Psychiatric Association is making final revisions to its Diagnostic and Statistical  Manual of Mental Disorders, including drastic changes to the criteria by which individuals are diagnosed with autism.

While these changes will have less impact on those diagnosed with “classic autism,” people who are currently diagnosed with Asperger’s Syndrome, a high-functioning form of autism, likely won’t  be diagnosed under the new, stricter guidelines.  In fact, the proposed new guidelines would eliminate the Asperger’s classification completely.

What does this mean for those currently diagnosed with Asperger’s?

According to a recent study by Yale University, less than half of patients currently diagnosed with Asperger’s Syndrome will receive an autism diagnosis under the proposed new guidelines.  Without that diagnosis, they will no longer have access to the therapies or educational resources neccesary to help them learn to interact and grow into socially adjusted adults.

I asked Mark Claypool,  a fellow optimist who I turned to for reassurance, to talk about these changes might affect our kids. Mark president and CEO of Spectrum Center Schools and Programs, an organization that provides academic programs, life skills training, vocational and transition services, support services and collaborative classrooms to students with autism, emotional disturbance, physical challenges and developmental delays:

Laura: My son has autism, but has never been considered “high-functioning”. Friends with children with Asperger’s Syndrome and HFA tell me how lucky I am–that it is easier fro me to get services for my son.What is your take on this issue?

Mark Claypool: It’s a frustrating problem for parents. Kids are getting caught in-between and every day that goes by for a child not getting the services that they need is a lost day.

Laura: I know parents of children with unspecified learning differences and behavior problems that have pushed for a diagnosis of autism just to get services. What has been your experience?

Mark Claypool: No parent wants their child to be misdiagnosed with a disability, no matter how badly they want the services. Perhaps the revised Diagnostic and Statistical  Manual of Mental Disorders will help us refocus on the needs of a child as an individual and not a label.

Laura: California and many other states now mandate insurance coverage for children on the autism spectrum for ABA. Doesn’t that lighten the load and responsibility of school districts?

Mark Claypool: Ideally, but right now, the schools are pointing at the insurance companies and the insurance companies are pointing at the schools. “Aren’t you going to do that?”

Laura: The most rewarding aspect of your job?

Mark Claypool:

  1. Making public schools work for children with disabilities
  2. Working with school districts to help them design services for children that need them
  3. Including  children with disabilities and keeping them at their home schools, rather than sending them to non-public schools.
Amen!
 Spectrum Center Schools and Programs, is an organization that provides academic programs, life skills training, vocational and transition services, support services and collaborative classrooms to students with autism, emotional disturbance, physical challenges and developmental delays. Spectrum Center partners with nearly 100 public school districts to help them educate students who have autism, Asperger’s Syndrome and other conditions. 

***

A REGULAR GUY: GROWING UP WITH AUTISM is a perfect teachers gift!

Order a copy HERE.

 

Why autism moms act the way they do

I ran into a friend at the dog park this morning and she asked me if I was “OK”.

“When I saw you last week, you looked like you were on the verge of tears.”

What was going on that day? Oh yeah…

 

Autism mom (me) holding it together--for nowAutism mom (me)holding it together but about to snap

Why to we act the way we do?

Here are just some behaviors you may see in moms like me and what they could mean:

1) We cry spontaneously for what appear to be weird reasons. Our specialty is crying in public and at IEP meetings, and let me tell you, it is not pretty.

Cashier at 7/11: “May I help you?”

Autism Mom: sniff, sniff, sob…”I’m not sure.Thank you for asking. I’m just feeling emotional right now.”

Why do we behave this way?

a)We aren’t sleeping

b)Our already busy and emotionally intense days are punctuated with phone calls that catch us off guard and hurt our feelings.

c)Our child does something amazing or really funny, we tell a friend and it is clear they don’t get why it’s such a big deal. We hold it together until the nice cashier at 7/11 say’s “May I help you?”

2) We join a book club. We think it’s a good idea to do something intellectually and socially stimulating,and then we never show up.

Why?

a) Evenings are hard. Our kids need us. We are drained.

b) We did not read the book and worry that we’ll say stupid things just to sound smart.

c) We are nervous about hosting book club at our house.

3) We are socially awkward. We didn’t used to be, but now we blurt out bold statements like “Hysterectomy? I had mine vaginally. What about you?” (or worse “has your wife had one yet? “)

Why do we behave this way?

a) We are immersed in the world of quirky kids. We’re out of practice.

b) We’re tired

c) We feel so lucky to be invited places that we are manic.

4) We become hostile when family, friends (and especially husbands) ask us “What did you do today?”

Why do we behave this way?

a) We don’t like the tone of the question (and there is no right tone)

b) We know in our hearts that we did the best we could today-how do you express that?

c)Let’s face it — no one likes that question!

5) As we age, lose interest in gossip because:

 

a) We know how it feels to be whispered about

b) We learn that everyone has a story

c) We know how it feels to be whispered about.

 

God bless us, and God bless our kids!

***

Have you read Laura’s book? It’s great. Read the first three chapters HERE and order it HERE.

___

 

 

Disabilities awareness month: True confessions from an autism mom

CHAPTER ONE of my journey 

 

When I was eight years old, Uncle Russell came to visit. He was my mother’s cousin, but everyone called him Uncle Russell. He was twenty years old and had a severe case of cerebral palsy.

Russell was pigeon-toed as I had never seen before, causing his knees to face each other. He walked in a spastic, bouncing stumble. His hands were gnarled and bent at the wrist, fingers curled, in a way that my brother and I found impossible to imitate. His long neck was thick with muscles pulsating from the strain of holding his large, constantly moving head.

Despite his challenges, Russell was always smiling. My brother Scott and I tried in vain not to laugh at him. Even my compassionate mother sometimes had to excuse herself to giggle in the kitchen with us.

“Laura, we’d better not laugh,” she said before going back to face poor Russell again. “God may give you one like Russell someday.”

Mom wasn’t superstitious, and I knew her warning was only meant to sober us enough to get our giggles under control.

Russell wore pointy red Keds and a baggy old cardigan sweater. His dark hair was greasy, and he smelled bad. I remember thinking that it would sure help if his parents dressed him nicely and cleaned him up a little. Looking back, I realize that his parents did the best they could-the shoes were probably the only ones that fit his feet; cardigans are easier to get on a spastic child than pullovers; and bathing a young man with cerebral palsy is a grueling job for aging parents beaten down by endless caretaking.

Through the years, there were others I couldn’t help but laugh at, like the twin brothers at summer camp when I was fourteen. One was normal and the other weird. The odd boy flapped his hands when he was happy; he’d rock back and forth and sing songs.  I didn’t want to laugh at him, so avoided crossing his path.  But one time his brother caught my self-conscious giggle and glared at me, deeply hurt.

I’ll never forget it.

When I was in my twenties and living in San Francisco, I was introduced to a nice-looking guy at a Christmas party. As he stood up to shake my hand, I noticed there was something funny about his legs. He seemed like a great catch-educated, funny and well-dressed. We sat down again and talked for a while. Eventually, he got my phone number. My excitement turned to dread when he got up to get us a drink. He walked like Uncle Russell. I stifled a nervous, embarrassed laugh and pretended to be laughing at a funny joke I had just heard when he got back with our drinks. Somehow I held it together for the rest of the evening.

He did call me for a date and I accepted. Before he arrived, I told myself that here was a terrific guy with a great attitude who had accomplished much despite his disability, and I should rise above my silliness, be a good person, have a great time. But when I opened the door to greet him bouncing up the stairs toward my apartment,  a bouquet of flowers shaking violently, I knew this would be our last date.

I called my mother the next day to share my date story. She didn’t laugh.

“I hope you were kind to him,” she said quietly. “It must be so hard for him. I’ll bet his mother worries.”

There was an awkward silence between us, and I felt like a superficial, spoiled brat. What could I say to redeem myself?

“If I had a baby with a problem, it would be hard, but I’d do fine. But I have a feeling my kids are going to be healthy,” I said.

“So do I,” said Mom. “So do I.”

____

If you’d like to keep reading CLICK HERE.

March is Disability AWARENESS month. Get involved HERE.