It was 10:01 on “Super Saturday” and I was weaving aimlessly through the isles of our local Target store.  Just like every year, I imagined that  I needed to buy just one more thing for each of my boys (OK, they are men now, but still…) Just as I came to my senses and realized that my young men would be fine with less crap than more, I spotted a  3 dollar Hula Hoop.

Bingo.

Have you ever seen anyone playing with a Hula Hoop without laughing?

The following is the list of tried, true and affordable holiday gifts that kids of all ages and abilities will love:

1) A Hula Hoop

2) A Bulletin Board.

You can make one yourself with supplies from the hardware store. I am not a very arts and crafty kind of person, but I am a market type. When you give a child a bulletin board, it’s all about the presentation. Tack (or I guess glue dots are safer) a few things on the board first to make it look cool. After all of the holiday craziness has subsided, get out a stack of old magazines and have your kids cut out words and pictures to put on their  very own Bulletin Board.

3) White paper and watercolors.

Here again, it is all about presentation. Set the water colors and paper on a table with brushers, cups of water and paper towels for spills. My parents gave me this gift at least 5 times, and they would put out a flower arrangement for me to paint still-life style. I think I’ll ask my kids for this for Christmas.

4) A rubber playground ball and some chalk for Four Square or Kick Ball. You’re going to have to sell this a little by running outside a showing your kids how YOU used to play these games.

5) A Bongo Balance Board. This is the most expensive item on my list a t around 80 bucks HOWEVER, it’s the kind of thing that the kids play with for a while and once they get to be good at it, they lose interest. Put it away and get it out in a few years, and everyone is excited about it again. Our Bongo Board has been rewrapped 4 times and it’s always a huge hit. (Maybe I’ll challenge my sons to use the Bongo Board while they are using the hula hoop.)

So if you haven’t started shopping, or you are too broke to shop, or if you don’t need to shop but can’t help yourself,  remember:

a) A holiday gift does not have to cost a lot to be a big hit

b) Holiday gifts that get kids up and moving are ALWAYS a big hit

c) You might have just the right gift up in the attic–you know, the Yamaha Keyboard, the Karaoke, Machine,  the Autoharp. Get them out, shine them up and wrap them up!

Happy Holidays

xoxoLaura

__________

If you haven’t read Laura’s book yet, you should. You can find it at your local library, or order it HERE. 

 

 

 

 

The year was 1991. Matthew, who had yet to receive a formal diagnosis of autism, was 4, and Andy was 2. My husband and I dressed them matching reindeer sweaters and took them to the company holiday party, where Santa was making an appearance. Andy climbed in to Santa’s lap and asked for a Nerf Bow and Arrow. Matthew was next, and asked for a drain. “A train?” Santa asked cheerfully. “No,” Matthew said, “a drain.”

Matthew wanted a drain. He was fascinated with water going down the drain, and wanted one of his very own.

Since I was still at the stage where I believed i could “fix” my son, I discounted his drain request and searched for educational toys that would “flip the switch” in his brain–Lincoln logs, painting sets, books AND a Nerf Bow and Arrow just like Andy’s. None of them interested him, and then later, we went to my brother’s house for dinner. His daughters had gotten one of those freestanding miniature kitchens with pots, pans, plastic food–and a sink with a drain.

I went out the next day and got one just like it.

The holiday season is full of hopes, dreams, and disappointment for parents of children with special needs. Here are 8 things to remember as we stumble into December:

1) Don’t go too crazy on the decorations. They are fun and festive but provide serious sensory overload for your child.

2) Don’t go too crazy on the shopping, and keep receipts. Is it just me, or is it one toy that everyone wants to play with, and the rest just sit there?

3) Is it just me, or are BIG building blocks the best gift ever?(THIS new study concurs.)

4) Take two cars to holiday parties when the whole family is invited.

You get the picture.

5) If you really want to go to a grown-up holiday party, get helpers way in advance. *

6) Resist the temptation to go out and buy more stuff the day before Christmas. You have enough.

7) Brace yourself for meltdowns.Diffuse them as quickly and as calmly as possible.

8) REMEMBER the meaning of the holiday.

 

Laura Shumaker is the author of A REGULAR GUY: GROWING UP WITH AUTISM, which by the way, is an ideal holiday gift. Order it HERE.

 

 

 

 

If you are the parent of a child/teen/adult with a developmental disability, you probably:

a)  Cringe at the thought of trying to explain things in a comprehensible way

b) Wonder if sex will ever be an issue (Spoiler alert. It will.)

c)  Worry about your child’s safety

d) Wish there was more information and research on all of the above.

Today, I’m profiling  Leonard Magnani, MD, PhD, an expert in the field of educating individuals with disabilities about sexuality.  He’s one of the presenters at UCSF’s 11th Annual Developmental Disability Conference March8-9 in San Francisco.
Dr. Magnani is a  Family Practitioner and Medical Director at the Alta Regional Center.

__________

Q: It seems that there are fewer women than men with developmental disabilities. In my 25 year old son’s day program alone there are zero women (and he is not happy!) Have you heard this complaint from your male patients?

 

 

A: For some developmental disabilities, like Autism Spectrum Disorders, there are more males impacted.  However, world wide studies show that more women have developmental disabilities than do men.  Women in all countries receive less services, in part because they and their caregivers are less aggressive in speaking out, and in part because they are more socially sheltered even in progressive, Western countries.  In studies of status, a young girl or women with a developmental disability, few financial resources, and minority group ethnicity, is ranked lowest on the list.

Q. I know that many parents of individuals with autism are afraid to talk about sex for fear that their children will obsess about the topic. How would you respond to that fear?

A. When talking about sex and developmental disabilities, I sometimes show a slide with a pink elephant in the living room.  Underneath I ask, “What elephant?”  No one wants to confront the fact that we are up against human evolution and physiology.  This is analogous to grief reactions:  some caregivers wishfully think, “Out of sight, out of mind,” and remove all pictures of the person who is no longer with us.  The fact is that almost all of mind, all of thinking, is unconscious.  It may take weeks or months, but the brain will react to the absence of familiar eyes, a well-worn voice or a special person’s reassuring touch.  Grief is a physiological reaction and the mind and body do best when there is continual story telling and remembrance of the departed.   Sexuality is also, of course, physiological; the body and mind will react to sexual yet unconscious thoughts, feelings and sensations whether or not it’s “out of sight.”  Boys more than girls will discuss sexual issues with their peers, and the society at large is filled with provocative images.  Talking about sex in a systematic and thoughtful way prevents acting out and other unhealthy behaviors, just like talking about grief leads to healthier outcomes.  Furthermore, in the case of sexuality, the strongest defense against sexual abuse is sex education.

Q. Are individuals with developmental disabilities having sex?

A. What we are dealing with is one of our species strongest drives.  There are books co-authored by individuals with intellectual disabilities, and written by people diagnosed with an ASD or cerebral palsy, that discuss their interest in relationships, including dating and sexual relationships, and the problems they’ve encountered and overcome.

Q.  What about birth control?

A. Birth control in most instances is a key part of sex education, whether the caregiver’s emphasis is technological (for example, pills and physical barriers to conception), or philosophical or religious (i.e., the promotion of life-long abstinence).   In recent years, the rights of individuals with developmental disabilities are finally coming to light.  Forced sterilization of men with a diagnosis of Down Syndrome no longer receive popular support.  Nevertheless, there is great variation State-to-State concerning how easy or difficult it is for a legal guardian to obtain forced sterilization of an adult with a developmental disability.

Q.  How early should parents talk about sex?

A. Sex is much more than intercourse, and we all know that.  If we define it as any kind of physical contact with a non-family member friend, like holding hands or kisses on the cheek with a special friend, then the earlier the better.  The “Good Touch-Bad Touch” and the “Circles” educational formats have learning guides for preschool and kindergarten children.   Teaching a child that it’s okay to hug Uncle Harry but it’s not okay to hug the Postman that way, is sex education.

Q.  The best way to talk about sex?

A. That’s the meat of the issue.  The best advice is to not try and reinvent the wheel.  There are many good programs that have workbooks, DVD’s and other teaching aides for parents and professional educators.   In March, at the Developmental Disabilities Conference in San Francisco, I’ll discuss this in more detail.

 

Q.  How can parents and caretakers supervise/facilitate relationships with the opposite sex?

A. A key behavior modification principal is to be proactive and to limit the antecedent conditions that produce undesirable outcomes.   Knowing where your child is and who they are with and who the parents are of those they are with, is the bedrock of adolescent and teen parenting.  Finding and working to develop peer social groups are difficult tasks but readily doable.

 

 

Q.  It seems that there  is very little literature or research out there as to how to teach people with autism how to behave appropriately in terms of their own bodies and other people’s as well. Why?

A. Times are changing and the large population of children diagnosed with an ASD in the past 15 years are now becoming young adults.  There are now books, group simulations and social stories designed to help people with autism develop the behavioral patterns that foist healthy relationships.  A difficulty faced by those with an ASD (that isn’t encountered by some others with a developmental disability) is the inability to recognize subtle facial expressions, body posturing or gestures.  Most communication is nonverbal, and this is so very true for friendships and relationships.  It’s a challenge, to say the least.  But again, there is a literature and proven expert guidance, so no parent has to go it alone.

Q. Our children/teens/adults are vulnerable. How can we make sure that they are not being abused sexually? How do we keep them safe?

A.We have to monitor the monitors.  Caregiver abuse is more common than we want to admit, as evidenced by the past admissions of the Catholic Church, and by the current University scandals.  The best defense is sex education throughout a child’s life.  The worse thing to do is to begin education after an abuse, sending the message that the child did not do the right thing.  There is only one strategy following abuse, support the victim as much as possible (and expose and punish the perpetrator).

Q.  What do you think is the most common misconception that people have about sexuality and the developmentally disabled?

A.Those with a diagnosed developmental disability tell us all the time:  their sexuality and sexual needs are no different than those of the general population, but no on seems to listen.

Dr. Magnani has much, much more information about this crucial topic and will share it at the conference.

Register now! (HERE)

To learn more about the conference, CLICK HERE.

More on coming of age info in the Autism Speaks Transition Toolkit.

 

“My 5 year old son was just diagnosed with PDD-NOS and has no speech. Will he ever be able to speak?” 

While the young mother stood before me in tears, I felt trapped; trapped because I couldn’t tell her that everything was going to be alright.

I couldn’t rely on my own experience to give her an answer. There was no answer. Time felt slow for a while. When I look back at my life, that 6 year old boy, going into first grade with so much anger, and so many emotions, it was almost too much. I knew back then I was mad. I was lashing out because I didn’t know how to communicate in an appropriate manner. That was almost 16 years ago. I was that 6 year old  again. What would it take for her son to be able to speak one day? Would he be as lucky as me?

 

So, I surprised myself. I hugged her. I hugged this complete stranger for what probably ended up being 5 minutes. No words were said. I could only hear her sobbing and I almost joined her several times. I  knew I couldn’t answer  her question, but by telling her about my journey, I could give her hope. I reflected back to  the journey that I had had led me to where I am today. The therapies, the special need classrooms, the accommodations, the hate, the ignorance, the awareness, the drama, the acceptance, the struggle, the tears, the heartache, the strength, the friends, my mom, my dad, and above all else the love that has made my journey worth every second. After we hugged I told her my story. I told her about that 6 year old boy and how he became who I was today. 15 minutes later tears of uncertainty had become tears of hope for not only her but for  her son.

This is why I like to talk  to parents. Each time I share my story that I’m  making an impact on a parent, a family, a friend–on the future of the autism movement. I may not be a scientist, or an expert in the field. I just know what it’s like to grow up–and thrive with autism. So, if you have autism, tell your story.

It’s time for all of us to listen.

***

Kerry is the Founder and CEO of KFM Making a Difference in The Community, a non-profit organization that is focused on special need housing for disabled individuals in New Jersey. Kerry, a recent Graduate of Seton Hall University works as a part time consultant for Autism Speaks as a Blog Writer. He has also worked as a Disability Advocacy Speaker speaking at several events about his life on The Autism Spectrum.

Do you have a story to tell? Read submission guidelines HERE

 

Do you ever wonder, why you?

Do you ever wish life had turned out different?

You love your child, accept them completely, but sometimes it’s all too much?

Today  my friend Claire Hayes, of AutismparentSupport shares her story:

***

 

 

I had been on the path of personal self development since my early twenties and I had turned 40 by the time we had the diagnosis of autism for my second daughter.  Surely, having a special needs child would be child’s play to someone who had taught personal transformation, who understood the relationship of mind to body, of limiting beliefs to behaviour?

No.

Not easy.

Talk about a curve ball…

Once upon a time…

Once upon a time there was a young woman who had a lovely husband and adorable 2 year old daughter.  They had moved up to the far North out of the Big City.  It was all going to be perfect: fresh air, sea and mountains, good food and a like minded community.  What could go wrong?

Well nothing actually.  For as we know, in fairy stories as in life, there is always a moral to the story, so the test becomes the transformation.

A girl was born…

Actually, it wasn’t quite like that.  For a start, I had a lovely husband and adorable daughter but the move changed everything.  I became lost and disorientated.  From being a Londoner with a professional track record and loads of friends and a lifetime of connections, I was cast off.  I knew no-one.  I was an incomer.   Everyone was too busy to pick up on the loneliness of this new arrival.  I sank quickly into depression.

I dwell on this, because my autistic daughter was conceived into this depression and despair.

Good fuel for the “It’s all my fault” mindtalk that caught me later….

A girl grew…

She was always strange, right from the moment she came out.  She was born at home, at about 4.30am.  My husband (and there is no blame here) went to bed to rest.  I was still wide awake from the euphoria of giving birth, but even I couldn’t get my first born to playgroup! So I called my friend and went downstairs to the kitchen to help with breakfast. My friend obviously wanted to see the newborn, so she went upstairs to see my daughter whom I had left swaddled on our bed.  “She’s not there!” my friend cried….”She must be, she’s only just been born!  She can’t have gone anywhere!” I replied.  I went upstairs and there she was, swaddled in white against the white sheets, and curiously “invisible”.  I don’t know why my friend didn’t see her.  I had left her in a really safe place far away from any overhanging covers.  I even have the photos to prove it!  Yet on some level she was invisible to my friend.

That’s why I know she came out autistic…

The mother couldn’t understand…

My daughter’s behaviour was strange, but only having one model of childhood (I had never really been around children before I became a mother) I wasn’t unduly worried.  Because my daughter’s “strangeness” was not picked up and diagnosed by the professionals whose job it was, we labelled her a slow developer and waited …and waited….

No help…

These were pre-internet days.  No Google.  No putting in the symptoms and getting something back!  Although it was very clear that something was “wrong”, we didn’t actually get a diagnosis until she was 8.  In a way, it would have been easier if she had been more “severe”, as we would have had an earlier diagnosis.

But no diagnosis, no help.

Help!

No help inside ignorance is a pretty scary place to be.

Beginning to see the picture…

Gradually it all started getting into shape. The turning point came when I was working one summer in Greece and a fellow member of the teaching team had an autistic son.  He was there with her, and there were so many parallels with my darling’s behaviour that the light bulb went on.

Back home, I asked for a test for autism and ta..da…easy as pie..Yes!

On the road…

Then I had something to get my teeth into.  I did my best with research pre-internet and finally found a programme I could relate to.  I ran a Son-Rise programme for 4 years, and the journey for my daughter to learn her new communication skills and flexibility and imagination and empathy was accompanied by my struggles with all sorts of issues of self-esteem, leadership, finances and so forth.

A baptism of self-growth demanded, (and gave back), so much.

But in all this my daughter was the sweetest girl imaginable.

The wall…

Teenage hormones.

Hell.

She really turned into a violent, unpredictable creature from hell.

Two years of destruction, physical and emotional.  It had all been going so well.

Well, they never said it was going to be easy…

The other side…

We got there, with help from everyone from therapists (for me) and doctors and acupuncturists (for my daughter).

We settled down.  We found a beautiful Care Home for her.  Places like gold dust. Funding?  I used every means at my disposal to get that place for her, with funding.  It worked.

For me, so far, that was the ultimate “test”.   For it needed everything to be in place not only on the physical, but also, I believe, on the mental and emotional levels.  Mindset and heartset.

Everything became very clear and focused, but also, as happens with life, the biggest obstacles came up.

It was like treading a tight rope, at any time I could fall, but I knew I had to get to the other side.  I had to choose to see the obstacles as opportunities.  A cliche I know, but cliches are born of truth and this was true for me.  My daughter’s path was my path too.

Happily ever after?

Let’s see.  At the moment it’s all good.  But I have been on this path long enough to know it is never straightforward.  At least for now it is a “breathing out” period…

So why am I telling you this?

Hope.   That’s it.  If you are feeling down, or confused, or overwhelmed, or isolated, there is hope.

We cannot predict the future for our children but we have every choice about how we tackle the present.

 

Claire Hayes 2011

http://autismparentsupport.com

***

Do you have a story to share?

I’ll be asking for submissions soon. Stay tuned!

Laura

**

A REGULAR GUY: GROWING UP WITH AUTISM makes a great gift. Read reviews and order HERE.

 

 

 

 

 

 

 

Excerpt from:

A REGULAR GUY : GROWING UP WITH AUTISM

The morning of May 22, 2006, I set my alarm for 4 a.m. I wanted to be the first one to wish Matthew a happy birthday. He was in a college program year at Camphill Soltane near Philadelphia. Matthew answered the house telephone on the first ring.

He knew I would call.

“Matthew!” I said. “You’re 20! Can you believe it?”

“Yes,” he responded flatly. “But Mom? I have something very important to ask you. I’ve been thinking about Amy. Can we go see her?”

Matthew had met Amy three years before during his first year at Camphill. Like Matthew, Amy has autism. The staff at the school had told us that they liked each other a lot and we were thrilled; since Matthew’s diagnosis years ago, we grieved at the thought of him living a solitary life.

By the time Matthew became interested in girls, he picked the “typically developing” ones—those who showed him even the slightest kindness, smiling at him in the hall at school or helping him as tutors in his special-education class, and he trailed them relentlessly. He would cry and sometimes yell at them if they told him to back off, and no amount of coaching helped. We were thrilled that the school community nurtured and supervised his friendship with Amy.

Amy’s parents were also excited about the budding relationship, and since they lived near the school, they were able to observe and support the autistic lovebirds.

“They are beautiful together,” said Katie, Amy’s mother. “They go for walks and talk, sometimes sitting on the garden bench. Amy doesn’t like to be touched and Matthew respects that.”

Contrary to popular belief, not all autistic people are averse to touch, and we were surprised that Matthew, who had been known to approach women of all ages and ask them if he could put his arm around them, or touch their hair, could restrain himself. I had shared this information with Katie and the school staff.

“So keep your eye on him!” I laughed nervously.

“Oh believe me, we do!” they reassured me.

Amy’s parents sent a picture of the young pair together, and they were a striking couple: Matthew, tall and blond with a wiry frame, broad shoulders, and brown eyes, and elfin Amy, short and slight, with long brown hair and pale blue eyes. The pair stand side by side, looking down and smiling slightly. “Amy doesn’t usually let anyone stand that close to her,” said Katie.

A few incidents in the course of the relationship kept us on edge, as when Amy refused to see Matthew for a week after he pushed her into a swimming pool fully clothed, and the time he followed her into the bathroom and locked the door.

“Did he do anything?” I asked the staff, my heart racing.

“No, he just watched her going to the bathroom.”

Whatever we are paying these people, it’s not enough.

While news of these missteps was unsettling, we felt fortunate that the staff remained calm. They used the episodes to teach Amy and Matthew appropriate rules of relationships. Everyone began to believe the relationship could last, and wouldn’t that be great?

But a few weeks before the end of the school year, Katie and Sam, Amy’s father, took the two out to lunch to celebrate Matthew’s birthday. Just as Matthew was opening a gift that Amy had picked out especially for him, he asked the group if they knew Katherine.

Katherine was a student-teacher-in-training who had been visiting the school for the last few weeks. I had heard that she was very attractive, and that Matthew was taken with her.

“She is probably better-looking than Amy,” he said. “I might like her better.”

As a person who would rather endure great pain than hurt anyone’s feelings, I was mortified when I heard about his comments. But Katie and Sam found them amusing and said that Amy didn’t take them personally. I didn’t want to ask whether they thought that Matthew was dumping Amy.

“If we could all be more straightforward, the world would be a better place!” they said, but I was more in favor of polite avoidance and gracious reserve. Unfortunately, Matthew will never be subtle. His brain is wired for brutal honesty.

Peter and I flew back a few weeks later to pick up Matthew for the summer break, and we asked him if we could meet Amy.

“I’ve moved on,” he said, “and we’re not going to talk about it anymore.” Katie and Sam stopped by to meet us in person, for by now we had already forged a strong connection, having commiserated long-distance about the road behind and ahead. We had laughed about our kids’ similar eccentricities and wondered how we could help them connect in a meaningful way.

Though Matthew and Amy parted for the summer dispassionately, we hoped that their friendship could be rekindled in the fall. But the following October, when I asked Matthew about Amy, he reminded me that he had moved on.

“Besides,” he said, “she got a haircut, and I don’t like it.”

 

In the year since Matthew had last seen Amy, who was now attending a Camphill School in New York, he had complained that there were not enough nice girls around, and that he was lonely. He asked me if I thought, perhaps, that Amy might be lonely, too.

I called Katie and told her about Matthew’s request, and suggested that perhaps we could arrange a visit over Memorial Day weekend. She agreed right away. Maybe we could have lunch at their home in Connecticut, and then go bowling and for a hike! I felt like such a good mother going the extra mile to help my lonely son.

Matthew and I drove from Philadelphia to Connecticut and spent the night with family before meeting with Amy and her parents.

“What will we do at Amy’s?” Matthew asked.

“We thought it would be nice to visit for a while at their house,” I said, “and then go out to lunch. Maybe we can go bowling.”

“No bowling,” he said. “When we get to Amy’s, all of the grown-ups will talk outside, and Amy and I will go in the house and sort things out.”

Sort things out?!

“What do you mean, sort things out?” I asked.

“I want to be alone with Amy in her room with the door shut,” he responded.

“But what if Amy doesn’t want to be alone with you, and what if her parents don’t want you to be alone with her?” I asked, all at once feeling like I was headed for a trap.

“I’ll tell them that I’m no one to be messed with,” he said, “and we aren’t going to talk about it anymore.”

It became clear to me that while I was making plans that you might see on a made-for-television movie, Matthew was making plans of his own.

After a brief discussion that escalated into a shouting match, I let the subject drop and called Katie with an SOS before we went for our visit the next morning. The two of us laughed uneasily about Matthew’s plan, but decided it would be best to go ahead with the visit.

“We’ll just have to be firm,” said Katie.

But the next morning, when we arrived at Amy’s house nestled next to a pond at the end of a lovely green country lane, there was no walking and talking and standing side by side with slight smiles. Amy, looking adorable in white capri jeans, tank top, and high-heeled sandals, was a bowling pin, and Matthew was the ball, with overwhelming momentum. After the initial greeting where we all told each other how great we looked, Katie suggested that we sit down and catch up.

“Listen,” Matthew responded, “I’m the boss today, and I say that Amy needs to be all alone with me in her room.”

“But I don’t want to be alone with him,” Amy whispered to her mom. “He’s too bossy.”

“Matthew,” Katie said calmly, “we are so glad you could visit. But Amy would be more comfortable if we all hang out together.”

“No way!” yelled Matthew. “I’ve been thinking about Amy for a long time! I even dream about her when I’m sleeping, and I want to be alone with her!”

God help me.

“What you are saying then, Matthew, is that you don’t care about what Amy wants,” Katie said, locking eyes with Matthew. “It’s only important what you want.”

“That’s right!” said Matthew triumphantly, like a game-show host moving a contestant to the championship round.

Sam, Katie, and I, all experts in managing autistic meltdowns, gave this visit our best shot and tried all of our tricks, but it was no use. When Matthew made plans, he was determined—obsessed—to see them through, and of course we weren’t going to let him have his way.

“Let’s go out to lunch now!” I said, desperate to move things along. It was only 10:30.

We all piled into the family’s minivan, Matthew leaning close to Amy, and Amy leaning away from him, muttering, “He’s bothering me. I don’t like it.”

During lunch, where Matthew ordered pizza and 21 french fries, Sam, Katie, and I tried to reduce the tension with cordial conversation.

“Matthew, tell everyone where you are going this summer,” I said cheerfully.

“I’m not in the mood,” he replied. “Let’s go back to Amy’s.”

“Matthew,” Sam said, trying to change the subject, “guess where Amy is going this summer?”

“I give up,” said Matthew, “and I’m tired of all this talking.”

Once back at the house, Matthew announced that he would like to stay a little longer, and then come back the next day, but Sam, Katie, and I, who all looked like we had aged ten years in the last few hours, blurted out reasons why it was time to end our visit—now. Somehow I managed to get Matthew back into the rental car, and we drove away. Matthew burst into tears, and when we got to the main road, I pulled over and hugged him.

“They wanted me to stay,” he said, “but I’m too busy.”

“That’s right, Matthew,” I said, patting his back. “You’re a busy guy.”

The next morning, I called Katie and thanked her, and said wow, wasn’t that exhausting. She said yes it was, and did I know that Matthew had asked Amy if they could lie down in the grass and do sex.

“Oh, Katie,” I gasped.

“She said she didn’t want to lie down in the grass because she didn’t want to get her clothes dirty and I’m not sure if she even understood what Matthew was wanting. She’s still pretty naive.”

“Oh, Katie,” I repeated, “I am so sorry. Thank you for telling me. Thank you for being so honest.”

“And we thought it was difficult when they were young,” Katie sighed.

***

When Matthew was in eighth grade, a psychologist who specialized in teaching adolescents with special needs about sex visited his class. A handful of parents, including me, looked on from the back of the room  as she stood in front of the class with the most impressive poker face and peeled the clothes off of a man doll and a woman doll. The dolls shared her ridiculous poker face as she fit their parts together.

“Oh, my God,”  Matthew mumbled in disgust , as parents stifled laughter. I was transported back to the day that I sat in the auditorium of Havens elementary school, slides of  male and female reproductive organs flashing on the pull down screen in front of Mrs. Stewart’s 6th grade class. Pamela Abernathy   fainted and fell back in her chair and my friends and I giggled reassured each other that our parents had only done that when they wanted to have babies. I wondered how Matthew was processing this information.

How could I be sure that he understood the basics of sexuality (including the urges??)

“If we’re not pre-teaching kids with autism going to middle school,” say’s Peter Gehrhardt, an expert in adults with autism and the Director of the Organization for Autism Research , “they’ll get a very skewed vision of human sexuality”.  Peter spoke at the recent Morgan Center Autism Conference. A podcast from his talk will soon be available and I will post it here.

Some tips from a past interview with Lisa Jo Rudy:

 

Think ahead – be proactive (“pre-teach”)

• Be concrete (talk about the penis or vagina, not the birds and bees)
• Be consistent and repetitive about sexual safety
• Find someone of the same gender to teach the basics of safety and hygiene
• Be sure to address the social dimension of sexuality
• Strongly reinforce for all appropriate behavior
• Redirect inappropriate behaviors. (such as masturbation.)

***

Meanwhile, back in Connecticut…

 

I decided to call Matthew’s primary caregiver, David Schwartz at Camphill, who had helped guide Matthew with his relationship with Amy from the beginning. He had a way of explaining things simply and frankly. Matthew had great respect for David and turned to him when he was upset, confused, or simply needed to work something out.

“I’ll talk with him as soon as he gets back,” said David. “I’ll call you and tell you how it goes.”

 

“What did you say? What did he say? Did you get through to him? Should I talk to him?”

David told me that he asked Matthew to tell him about his weekend. “How did it go? How is Amy doing?” he had asked.

“Amy looked nice, but the grown-ups wouldn’t let us go in Amy’s room and shut the door.”

“Did Amy want to go in her room with you and shut the door?”

“Not really. So we went outside and the parents kept watching us.”

“Did Amy want to be alone with you outside?”

“I’m not sure.”

“Did you touch Amy?”

“I wanted to. I wanted her to lie down on the grass so we could do sex.”

“Have you ever had sex with anyone else?”

“Probably not.”

David told Matthew what he had heard many times before—but none of it had made sense until today.

“Sex is part of a loving relationship. Both people have to agree to have sex, or it is out of the question. If you have sex, the woman can get pregnant and have a baby. Do you understand?”

“Yes.”

“Are you ready to be a dad?”

“No way. I decided I’m not going to do sex with a girl after all.”

David reassured Matthew that it was normal for a man his age to want sex, but that there were other ways to satisfy those urges.

“Did you tell him how to masturbate?” I asked, blushing through the telephone.

“Believe me, Laura,” David said. “He’s already an old pro at that.”

He told him that in a few years, when Matthew was older and more mature, he might be able to have a relationship.

“The business of sex and relationships is complicated for all of us,” said David. “Matthew needs everyone to support him through this. Just keep it simple, be honest.”

I thanked David profusely, and he said you’re welcome, “but I’d better get going,” he joked. “I’ve got to keep my eye on Romeo!”

***

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When I pulled into the parking lot of my 23 year old son’s home near Santa Cruz, California, he was standing there with his head cocked impatiently. “You said you would be here at 12 noon, and it’s 12:11 already,” he huffed. Even though it was a cold and drizzly February day, Matthew was wearing his favorite outfit- white socks and sandals, shorts and a Roy Orbison t-shirt.

Matthew has autism and lives at Camphill  California, a community for individuals with intellectual disabilities.  I was picking him for his routine first-weekend -of –the-month visit home an hour north near San Francisco. The weekend routine included a dance at our church for disabled young adults and a series of gardening jobs for neighbors and friends prearranged by Matthew himself.

When Matthew climbed into the car for our drive home, he launched into his usual tedious discussion about the origins of the song “Pretty Woman”.

“Who did Roy Orbison write it about? Why did Van Halen also sing the song? Was Eddie Van Halen singing it about Valerie Bertinelli? Did Roy Orbison ever get to meet David Lee Roth? Was David Lee Roth sad when Roy Orbison died?

It is a draining conversation to maintain, but I manage to respond with feigned interest.  So many of my friends have children who are non-verbal; they would give anything  to have the kind of interaction I have with Matthew.

After our Roy Orbison discussion played itself out, Matthew exclaimed that he couldn’t wait for the Super Bowl.

“I didn’t know you were a football fan”.

“All men are football fans,” said Matthew with a sly grin, “and they all go to Super Bowl parties.”

I felt completely unprepared for this change in the schedule, one that I knew might be hard to rig. My husband and y two younger sons were away on a ski-trip, and it’s never easy to find and invite oneself to a party with little notice.

“I can invite some people over for the game,” I suggested.

“I want to go to a party at a different house and I don’t want my mother to be there,” Matthew replied flatly. “I’ll call my friends tomorrow.”

The friends that Matthew was referring to are the non-disabled ones he knew in middle school who had  been kind to him and had worked as aides in his special education class. Most are 23 like Matthew and have graduated from college and are in the work world. They have moved on.

When we got home, I called an army of family and friends who had generously saved the day in situations like these in the past.

“I need a Super Bowl party for Matthew,” I told them, but only one I could reach right away was my  friend, Kate, just as she and her family were leaving for the weekend.

“If we’re back in time Sunday,” she said “he’s welcome to come here for sure.”

***

After breakfast on Saturday morning, I lingered by Matthew’s bedroom door and listened as he phoned his “friends”.

“Hi, it’s me, Matthew. Is Joe there?”

Long pause.

“When did he move?”

Pause.

“I really wanted to watch the Super Bowl with him.”

Long pause.

“OK Bye.”

Matthew made phone calls like this on and off throughout the day with no bites.

By 4pm, I was counting the hours before bedtime when Matthew asked if we could go to the store.

“I want to get some chips for the Super Bowl Party tomorrow. We should make some cookies, too.”

Without a clear plan by Sunday morning, Matthew was desperate, and so was I. “I seriously need to go to a Super Bowl Party!” Matthew wailed, “and everyone is just so busy!”

I made the mistake of telling him that Kate and her family might have a party if they got home in time. Matthew jumped on the phone and called their number over and over, slamming the phone down every time he heard their “We’re not home” message.

“Would you like to go out for pizza?” I asked him. “They might be home by the time we’re finished.”

“No thanks,” he replied, “there will be plenty to eat at the party.”

He went into his room to listen to music until 3pm, and then asked me for a nice plate to put the cookies on.

“I’ve decided we should just go to Kate’s house” he said.

“That’s fine,” I replied, “but when we get there, they may not be there. Or they might be tired from their trip and tell us to go home.”

“It will be fine,” Matthew said. “I remember that they are usually really nice.”

Matthew was serene as we drove to Kate’s house, the plate of cookies and bag of chips on his lap. I, on the other hand, was a mess.  Some have nightmares about going to a class unprepared—I have nightmares about imposing on people.

“Please, God,” I prayed en route,” Let them be home and let them invite us in.”

When we pulled up to Kate’s house, Matthew bounded up the stairs and knocked on the door with a big grin. Kate opened the door in her bathrobe and smiled back.

“Matthew!” she said, “I was hoping it was you! We just got home!”

Matthew walked in and put the cookies on the coffee table just as Carrie Underwood started singing the Star Spangled Banner. Kate’s husband and teenage sons took their place on the sofa next to him.

“I’ll need a bowl for the chips,” Matthew said, “Mom, you’d better get going.”

Kate winked at me, I mouthed the words “Thank you and God bless you,” and went home.

I dropped Matthew off the next morning at Camphill, feeling like I had just crossed the finish line of a triathlon. Before I could get away, Matthew chased after my car and waved for me to stop.

“Mom, wait, I forgot to ask you something very important that I’ve been wondering about. Did Roy Orbison ever meet Valerie Bertinelli?”

“I don’t know,” I sighed, “but I’ll find out and we can talk about it next month.”

An excerpt from A Regular Guy: Growing Up With Autism

“Grandma, I don’t like you to wear that,” Matthew said, standing in the doorway of my parents’ bedroom. He was referring to the plastic tube that cradled Mom’s face, pushing oxygen through her nose. It was the last day of August 2002, just before Matthew was to return to Camphill for his second year.

“Matthew, you can come over and sit next to me. I’ll show you how this works.”

He plopped onto the bed next to my mom and listened as she explained how her lungs were tired, and how the plastic tube carried oxygen that kept her going.

“I don’t like it, it looks bad,” said Matthew. “I like you better the other way. I like it better when you’re not in bed all the time.”

“Matthew,” I started, but Mom signaled that she could handle it.

“Here,” she said, pulling the plastic tubing from her nose, just for a few seconds. “Is that better?”

Matthew’s face exploded with joy.

“Hi, Grandma!” he said, holding her too tight, but not tight enough.

Just one month later, with Matthew safely back at school, my father called at 3:10 in the afternoon, and I knew, because we always talked at 8:30 a.m., and then at 5:20 p.m., right before Tom Brokaw.

“Mamma died,” he said. I told him I’d be right there.

I drove to Carmel calmly, yet tearfully, calling people from the road to share the news. Everyone expected it, but no one could believe it. Only 71 when she died, she never complained during her steady decline. Instead, she remarked daily about how lucky she was.

Dad had taken care of my mother cheerfully and tirelessly. His family and friends encouraged him to get help, a night nurse or an aide, but he refused, and somehow survived the years of constant caring, lifting, and lack of sleep. When my mother was discouraged, he would take her face in his hands and tell her he loved her. Even when she was at her worst, Dad took her to get her nails done or her hair styled, or out to lunch at a favorite spot. He made sure her lipstick was always nearby; he prepared and presented her meals with flair. She continued to laugh at his jokes, and he at hers, his eyes glistening with grief.

By the time I got to Carmel, Mom’s body had been taken away, and Dad was leafing through his address book calling one name after the other.

“Joannie? Phil Bowhay. Susie passed away this morning. I know you did, she loved you too.”

My dad was so distraught that I didn’t dare shed a tear or cave in to my grief, and I took over the phone calls when it got to be too much for him. But there was one phone call that neither of us had the courage to make that day.

“When are you going to tell Matthew?” Dad asked. “You’ve got to call Matthew.”

It was bedtime in Pennsylvania, so I decided to put the call off until the next morning. I shared the news with Matthew’s housefather, David, who encouraged me to call early the next day so that Matthew’s housemates could say a prayer for my mother at the morning meeting.

“Hi, Matthew. It’s Mom.”

“Why are you calling?” he asked calmly.

“Matthew, I have some very sad news to tell you. Grandma died yesterday.”

“She died?” he yelled. He dropped the phone and wailed, “My Grandma died! Oh my God! I loved my Grandma so much!”

“Matthew?” I tried yelling into the mouthpiece loud enough that he would hear me and pick up the phone again.

“MATTHEW?” I started crying, sobbing for the first time since I’d heard the news myself.

Matthew picked up the phone again and started to ask questions. When did she die? Tell me everything. What was she doing when she died? What did Grandpa do when she died? What was I doing when she died? Was I just kidding, and was she actually alive? No, I cried, I’m not kidding.

“What was the last thing she said?” he asked tearfully. I turned to my father.

“Dad,” I sobbed, “Matthew wants to know what Mom’s last words were.”

Dad took the phone and said, “Matthew? The last thing Grandma said was ‘I sure am proud of Matthew. I sure love him.’”

An excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

It was after a public anxiety attack at California Pizza Kitchen, where our family of five was celebrating my birthday about a week after the babysitting fiasco, that I came to the inevitable conclusion: I needed to find my own therapist.

That night, Peter and I had just suffered through a particularly grueling meeting at Matthew’s school, where he was now in the fourth grade. One of the behavior specialists had come up with the idea of polling Matthew’s peers, the regular-education kids that he was mainstreamed with at recess, and asking what they thought of him.

“He’s weird.”

“He smells bad.”

“I’m scared of him.”

These were just a few of the responses that sent me crying from the IEP (Individual Education Plan) meeting in tears.

That behavior specialist didn’t last in the district very long.

When we arrived at the restaurant, my eyes were still swollen from crying. Peter thought that a family dinner at a kid-friendly place would be a great way to cheer me up.

The restaurant was surrounded by shops in an outdoor mall, and as we took our seats I soon found myself overwhelmed by the crowds streaming around inside and out, by the din of their voices—by everything. With the five of us crammed around a table for four, I remember looking across at Matthew—his blond hair shining under the glaring lights, his beautiful brown eyes not meeting mine, his distracted smile—and feeling a crushing heaviness in my heart, too acute to share with anyone. He wore a red polo shirt, one I had picked out; it made him easy to spot in a crowd should he dash away impulsively, as he was known to do.

Sitting anxiously at the small table, my knees jammed against its legs, I suddenly felt the shock of a spoon hitting me in the chest, hurled by Matthew as he darted out of the restaurant giggling into the sea of people. Up and out of the restaurant I flew, tackling Matthew to the pavement as he was about to dart into a busy street, surrounded by the judging eyes of onlookers. Sobbing, breathless, and utterly depleted, I couldn’t see daylight. I dreaded my future.

I had always been a healthy person, but lately every cold I caught turned into bronchitis or worse. Stomach pains and sleepless nights stretched on for days. I knew Peter and my parents worried about me, but I was beyond their ability to help. I fretted about the expense of seeking professional help for myself, about whether all funds should be devoted to Matthew’s cause, and wondered if I would be able to find a therapist who could connect with me and help me bear the weight of my uncertain future.

I hadn’t had great luck with therapists in the past. The first time I saw a therapist, I was a few years out of college and needed direction. I chose a radio psychologist who told me as soon as I sat down that she was going through a difficult divorce, and that she was waiting for an important call that she would have to take. While waiting for the call, she told me of all the famous people she had met in her role as a radio personality.

The next one I found told me I had a self-esteem problem as a result of having recently been dumped by a boyfriend. She asked me to role-play with an empty chair.

“Tell Charlie how you are feeling. Go ahead and hit him if you’re angry.” I think I actually yelled at the chair, but refrained from hitting it.

When Andy was a baby and we were beginning to worry about Matthew, Peter and I went to a therapist to talk about our struggles with balancing marriage and a growing family. His name was Roger Glum, of all things, and he had an annoying habit of looking at Peter while I talked, and then at me when Peter spoke.

After gauging our reaction toward one another, he paused and asked, “Do you guys watch thirtysomething?”

Yes, we had seen thirtysomething, a TV show filmed in muted tones about whiny couples also struggling to balance marriage and growing families. So?

I asked my doctor for a referral, and he enthusiastically recommended Rebecca Elliott.

The day of my first appointment with Dr. Elliott, I almost backed out. What could anyone say to me to help me with my complicated situation? Where would I even begin? And what if she did the role-playing thing? But I forced myself to meet her at least once.

Dr. Elliott, who I guessed was a little older than my forty years, was a pretty, petite woman who listened attentively as I tried to paint a picture of my life. Midway through my long, tearful, and disjointed monologue, I stopped and said, “Am I making any sense?”

“You are making perfect sense,” she said, and so the healing began.

In my circle of friends who have children with disabilities, we have a phrase we use to describe whether or not a teacher, doctor, or friend understood our situation.

“Does she get it?”

“I don’t think he gets it.”

“I asked her if she got it, and she said, ‘Do I get what?’ She doesn’t get it!”

A session with Rebecca was not the classic “And how did that make you feel?” kind of nightmare. Rebecca was all about action. She saw the big picture and extracted truths and feelings like a skilled surgeon. What can we do to make your life more manageable? You need services. Here is how you get them. Need a new psychiatrist for Matthew? Rebecca knew the best. Your knee requires surgery? Call this guy and mention my name. You’ll need help at home while you’re healing, call this agency.

“You need to get help from the Regional Center of the Department of Developmental Services,” she said, and I nodded reluctantly.

“I’ve been putting that off,” I admitted. “Just the act of calling them is an admission that Matthew’s condition is lifelong.”

Rebecca told me not to weigh myself down by mourning about the future. She pointed out that our family was eligible for services now, such as trained caretakers. I could finally get a break.

“The Regional Center will pay for several hours a month of help for Matthew. You could use the funds to hire a mentor for him and perhaps a babysitter for all three boys so that you and Peter can get a break.”

With Rebecca’s guidance, I made my way out of the loud restaurant with flying utensils that my life had become to a place where I could stand back and view my possibilities with long-lost optimism. Insomnia and anxiety had paralyzed me, and Rebecca explained, without talking down, that serotonin levels in the brain were changed by chronic stress; that medication with therapy was needed to get me back on track. She referred me to a psychiatrist, who prescribed an antidepressant, and she made sure that he and my regular doctor worked together on my behalf.

One day I got a call from an associate of Rebecca’s. I had an appointment with Rebecca that day, but it turned out that she was very ill and would have to take some time off. I tried my best to find out the nature of the illness, but her colleague wouldn’t tell me. I wanted to tell her that Rebecca and I were good friends, which I believed to be true, and that she would want me to know, but having heard in movies about “transference,” when a patient mistakes therapy for friendship, I backed off.

I called a friend who also saw Rebecca, and we tried to figure out a way to find out more. I decided to call a few Bay Area hospitals to ask if she was a patient.

“Brilliant!” my friend said.

“Alta Bates Hospital,” the operator answered.

“Yes, I’d like to deliver some flowers to Rebecca Elliott. What floor is she on?”

“She’s on three.” Bingo! “Would you like me to put you through?”

All of a sudden I felt like a stalker.

“No, no, I’ll just swing by later with the flowers. Thank you!”

That afternoon, I tiptoed off the elevator on the third floor of Alta Bates Hospital with a small bouquet of flowers in a vase and went to the closest nurses’ station.

“Will you see that Rebecca Elliott gets these?” I said to a young nurse at the desk, my feet poised in getaway stance.

“Oh, go right in!’” she said, gesturing toward room 3112, two feet away. “She’s awake.”

Feeling incredibly nervy and wildly over the line, I placed the flowers in front of room 3112. Didn’t this woman know that Rebecca had to be protected from nuts like me?

“Oh, no. I don’t want to bother her. She’s my psychologist,” I blurted as the nurse picked up the flowers and paused by the room, looking apprehensive.

So much for being discreet. I took off down the hall to the elevator, and once I got in, I laughed, thinking of what was transpiring in room 3112. I could see the smile on Rebecca’s face as she saw who the flowers were from, and I knew we would share a laugh about this scene later. My father always says, “Never squelch a generous impulse.” No matter what.

Thankfully, Rebecca recovered from her illness, and we did laugh about my brazen act of kindness. We talked briefly about her illness. But there was work to do, and Rebecca swiftly moved back to the business of bracing me for unknown challenges ahead.

 

an excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

Matthew was always in the same spot when I came to pick him up from Merriewood preschool, shoving pieces of tan bark from the play area through the chicken-wire gate at the school entrance. No matter what the weather, his handsome face and blond bangs peeked out from his blue corduroy hooded jacket, and his rosy mouth curved in a slight smile. He was always alone.

“Someone has been looking for you,” Gretchen would say, and while Matthew looked happy to see me, it was only because I arrived on time. If I had arrived even five minutes earlier, he would have flipped out and forced me to wait by the gate while he did his bark-shoving. This was just one of the many rituals Matthew insisted on during his day, and he was collecting more all the time.

The group of mothers whom I met at Merriewood were kind to me and to Matthew, and they had included us in a few group playdates. I loved the idea of being included, but the differences between Matthew and the other children his age were amplified when we gathered. I chased Matthew around cheerfully and tried to draw him into the group, but ended up apologizing for his quirks.

“Oops, Matthew, the cookie doesn’t go in the heater vent!”

“That’s right, Matthew, light! He’s fascinated with lights.”

“I’m sorry. . . ”

In the end, I felt like the manic cheerleader who kept missing her flips.

While I was trying to move Matthew along with Dr. Davies’s suggestions, I was haunted by a leaflet I had picked up in her office, one that listed autistic symptoms. It seemed that so many of the items on the list were sprouting in Matthew every day. Those that worried me the most were the ones that had nothing to do with speech and language.

“Insistence on sameness; resists changes in routine.”

I have to go around the block before pulling in the driveway or he’ll flip out.

“Difficulty mixing with others.”

Difficult? He just won’t do it.

“Sustained odd play.”

The wheels, the drains, lining up toys, licking everything.

I watched the children who were receiving speech therapy getting better, and I resented Matthew because his gains were so much less impressive.

“Wow, Nickie is doing so well,” I commented to his mother in the speech waiting room.

“He’s made great strides,” she replied proudly. “His developmental pediatrician said that he’s never seen such a huge improvement in such a short time.”

“You’re going to a developmental pediatrician? No one told me to see a developmental pediatrician. Who do you go to? What’s their number? What else are you doing? Hold on, let me write this down,” I said, digging frantically in my purse.

“You’re doing vision therapy, too, aren’t you?” she asked. “And you’ve got to get all the wheat and dairy out of his diet.”

I wrote it all down on the back of a grocery receipt.

“How did you hear about all of this stuff?” I asked, feeling like I’d missed out on membership at an exclusive club.

“From other parents, mostly,” she said. “But if I were you, I’d get on the developmental pediatrician’s list right away. Matthew’s autistic, right?”

She threw it out just like that. I felt the blood rush to my face and my heart raced dangerously.

“I don’t, we don’t know yet,” I managed. I wanted to hide, to disappear.

“I just assumed,” said the mother. “Gosh, I’m sorry. I’m sure he’ll be fine.”

Again, I spied at Matthew from the rearview window as we drove home, and I wondered. When was the last time I looked at him and smiled proudly? When was the last time I didn’t suspect that there was anything wrong?

I needed to remember. I needed to get that feeling back, or I would go crazy.

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