1. Worrying about the future. What will happen when I’m gone?  The BIGGEST worry by far. Many stories on the topic HERE. Just scroll away.
2. Handling Meltdowns/Aggression
3. Best and most effective treatment?
4. Feeding Problems/ Sleeping
5. Helping my child make friends/Social Skills
6. What about the siblings?
7. Toilet Training
8. Transition to adulthood/ Puberty /Dating
9. Finding a time for myself/ finding helpers
10. Training for teachers

What are your concerns? Let’s help each other!

We got worries

Potty Training, Autism Style

Training a child to “go” on the potty is kind of like giving birth. Once it is DONE, you forget what a rough stage it was to go through. I asked a group of parents of teenagers with autism to recall what their potty training experience was like, and they looked at me as if  I’d asked them a trick question.  “I’ve blocked it out,” one finally replied, “all I remember was that it was all consuming and discouraging and went on forever. Can we change the subject?”

No, we can’t! Children with autism have whacky sensory systems and can be hard, but not impossible to train. You have to be creative. This is one time that you must even be open to unsolicited advice, because you never know what will work for your child until you try it.

I asked my Facebook autism forum to share their potty training success stories:

What is the best way to potty train a child with autism?

I have a friend that loves Halloween more than any holiday. Her problem is that she lives one mile up a steep hill. Still, she gets more trick-or-treater’s than anyone in town. How? She gives out 1 pound Hershey Bars. This is the idea behind a very effective potty training strategy: Motivation. Some call it bribery, others call it positive reinforcement, but the bottom line (no pun intended) is that children need to feel motivated to succeed. When your child has autism spectrum disorder, the motivation game is predictably unpredictable.

 What motivates your child?
“My daughter was still having accidents at age five, so I bought her a Hello Kitty Tea Set that she really wanted and set in top of the fridge where she could see it. I told her that once she went a month with no accidents the teas set was hers. What a nightmare. She started out well, with three good days in a row, and when she had an accident on the fourth day, she was so stressed out and had a huge tantrum. I gave her the tea set, and then switched to small rewards, like bubbles, stickers, time on the Wii each day she was accident free. She had fewer and fewer accidents and within a few months, she was having none at all.”

Sheila, North Dakota

It’s a good idea to stockpile practical and inexpensive motivators based on your child’s interests. ABA types say it’s best to stay away from food as reinforcers, but many of the parents that I talked with admit to using candy and goldfish in the mix.

Parents list of motivating non-food reinforcers:

• Video time- wii time,  iPad, iTouch time, iTunes cards
• bubbles, stickers
•  lego characters
• coloring books
• small toys like you might find in the treasure chest at the pediatrician or dentist, matchbox cars,  Silly putty
• a visit to the dollar store
•  praise (more about that below)
• coins for the piggy bank ,
•  time with mom alone, time with dad alone,
• puzzle pieces
•  piano time, drum time
•  crafty activities.

Not all children are motivated by toys and treats. When we started to potty train Matthew at age three, he was obsessed with drains. He even asked Santa for a drain for Christmas. “A train?” asked Santa, “No,” I laughed nervously “He wants a drain.” We live in California, where the idea of letting a child pour water down a drain as a reward was frowned upon. What else could we try?  Here are some inventive motivators that are so common sense that It I can’t believe wish I had thought of them myself:

Target Practice

“My son has Asperger Syndrome and when I tried to potty train him when he was 3 years old, he showed no interest, and I wasn’t sure what I should do.  My daycare provider was a woman with 9 children and several grandchildren. She had him potty trained in 2 weeks by putting dish soap in the toilet and telling him to make bubbles. Sometimes she would put cheerios in the toilet and tell him to try and hit the cheerios.”

Sarah, British Columbia

I know. Target practice isn’t so easy for girls. It is not a perfect world! More solutions:

Potty Training Videos

“My son has classic autism and is completely non-verbal. Showing him potty training videos (over and over and over again) worked for us. He was 5, and watched Elmo, and Bear in the Big Blue House potty training videos and potty training videos on you tube. He went from having no potty training skills to being completely potty trained in a few months.”

Sam, New York

Fun with timers?

“Try using a timer, and make it seem like a fun thing when it goes off. Be excited about going to the bathroom. This worked for us. We got a fun little Thomas the Train timer that my son could set himself.”

Kristin, Oklahoma

“We had great luck potty training our son, who is non-verbal, with pictures. I would set the oven timer for 15 minutes. When the timer went off, I would show him a picture of our bathroom, then tell him ‘potty’. I would take him and he would go. We went every 15 minutes for about a week, and then upped it to every 30 minutes. I would show him the picture before we went every time. We cleaned up all accidents in the bathroom to let him know that all toileting belongs in that room.”

Maria, California

“My daughter has severe autism, and responds to slow and steady, so we respect her pace. We take her into the bathroom with a timer (5 minutes max) and do our best to remain patient and unemotional about the whole thing. If we push her too hard, she gets anxious and regresses. She is 8 years old now and still wears pull-ups, but she’s able to communicate to us when she needs to go.”

Nora, Washington

Praise

“Our son is 4 1/2 and with the exception of an occasional accident he is fully potty trained. We tried to make it as much of a fun and positive experience as possible. We find that constant praise really works. We also got him a fun book called ‘The Pirate Potty’    that has reward stickers and a cute pull out pirate hat.”

Jim and Katie, Florida

Don’t you hate it when friends with perfect children notice you struggling with milestones such as potty training, and they say “Potty training is hard for ALL children. You just have to be patient.”

I’ll give you patience…

Potty Party

“My son’s therapy coordinator and I had a potty party. We sat in the bathroom all day and pumped him full of fluids. We had books and toys in the bathroom. When he went potty he got to do his most favorite thing for 5 minutes and then went straight to the bathroom where the drinks continued. We did break for lunch. We did it from 8am to 5pm. We went straight to underwear and diapers at night. My son was completely potty trained in 2 weeks.”

Madeline, Michigan

Miralax

“My son is almost five, and it took us a year, but we finally have it down. Bribing worked great for urinating in the potty, but bowel movements were a completely different story. He wouldn’t ever go in his underpants, but he would hold it for seven days at a time until it became unbearable. By the time it got that bad, it really scared him because he was so constipated and worried it would hurt. We heard that many of our friends with autistic children used Miralax to solve this problem, so we asked our pediatrician. He gave us the green light, and it has made all the difference. We give our son just 1/3 of the adult dose, and mix it in with strawberry/chocolate milk. It’s NOT a laxative, it just makes it easier to eliminate and harder to hold in. Since my son loves cars and trains, we buy him underwear with those on it, and then we say, “We don’t potty on our friends!” and that really rang true for him. Our doctor told us to keep our son on Miralax for at least six weeks for best results. After the six weeks, our son’s fears were dissipated and he learned that potty time just a natural part of growing up.”

Claire, Rhode Island

Potty Boot Camp

“We set up in-home potty boot camp for my son when he was 5. Telling him why he needed to use the toilet didn’t really register, so we would wait until we thought he needed to go (usually an hour since the last time he went), then walk him over to the toilet and help him situate his naked bottom atop it. While he sat on his throne, we would let him watch a favorite video on my laptop until he produced — that way he could see for himself why using the toilet was a good idea, and so much less icky than going in his pull ups. And every time he produced, we gave him huge positive reinforcers: M&Ms, goldfish crackers, hugs, cheers — sometimes all four. We followed up with the peripheral aspects of toileting which can be overwhelming for kids like my son who need extra time and support to process sequences. Like wiping (and checking for effective wiping); pulling up underwear first, then pants; and washing hands (multiple steps). We encouraged him via reinforcers with his post-toileting routine as well.”

Shannon, California (Editor of  THINKING PERSON’S GUIDE TO AUTISM)

Matthew’s potty training ordeal was stressful, because he was entering a mainstream preschool with a long waiting list where all of the children were supposed to be trained before being admitted, and he did not appear to have any interest.

“He’s not 100% there,” I confided to his teacher, in fear of losing his spot. “I would actually say he is not there at all.” She told me she understood, and would help him.

After one week of effort from this dream preschool teacher, the job was done! How did she do it?

“I took him to the bathroom ever 20 minutes,” said Gretchen, “and praised him whether he went or not. By day three, he started pointing to the bathroom when he had to go.”

Did he do as well at home? Did I cave in and incorporate his love for drains and the target practice drill into his potty training?  It’s entirely possible, but I don’t remember.

I blocked that part out.

_____

Read the first three chapters of Laura’s excellent book HERE.

Order it HERE.

“Oakland,” I answered with a sigh.

“Where is the next airport?”

“San Francisco. Then San Jose, Morgan Hill…”

“Stop!” Matthew wailed,”I need to ask you first.”

Matthew was 10 years old, and his obsession with airports was wearing me out. I was only allowed to stop answering him when the phone or the doorbell interrupted us.

He was stuck.

Looking back, I believe that Matthew wasn’t intentionally trying to drive me (and everybody else) crazy. I think he was trying to connect, and his fascination with airplanes and airports was the only way he knew how.

I asked parents and teachers on my facebook autism forum offer their tips:

How can we help our kids get “unstuck”?

1) VISUAL IMAGES

When one of my students gets stuck on a particular topic, especially one that is scaring her, we print out a picture from Google images and then tear it up. That gets the thought out of her head.

Jessica Roe

2)REDIRECTION

I usually say, “Is this a big deal or a little deal?” and she usually says, “a little deal” – then I say, “If it’s a little deal then we’re not going to worry about it” – then, of course, redirection and bribing if needed.

Tracy Donohue

I usually just engage him a bit in what he wants to talk about. I don’t want to cut him off and have him feel what he has to say, whatever the subject, isn’t worthy of being heard. Then, once I know he’s told me everything I just change the subject to different things.

Kris Scalaro

3) TALK IT THROUGH

Redirection never works with my son. I use this formula:

1.acknowledge the issue

2.parallel yourself somehow, let your child know of an instance when something similar took hold of your thoughts

3. confirm that the issue will be resolved.

This actually works with ANY situation and anybody, but when I started really doing this with my son, it helped him instantly. It was like a light bulb went off in both of us. Keep following 1, 2, 3 until your child gets unstuck.

Linda Pasqualone Francese

4) SET LIMITS

Stuck on a conversation topic (many times a day here): “one more sentence and then I’ll listen to more when done with homework, but now it’s time to do this other thing. Write a note in a notebook if it helps to remember.” I listen intently to that one sentence. It gets the pressing subject out of his head, gives comfort that his conversations are important, and sometimes he forgets to get back to it!

I ask questions when he returns to the subject to get him more into conversational speech rather than just dictating facts. I listen intently and keep my promise to do so. (not always easy!)

Karri Gunnerson Jose

5)SET A TIMER

I’ve had very little success in stopping an obsessive train of thought once it starts! Now, I typically set a timer and say, “I will listen/talk about this for x minutes, then I’m done.” Once the timer rings I just keep repeating “I’m not talking about this anymore with you now”. Which 7 out of 10 times results in a meltdown–then I move on to meltdown strategies.

Lee Anne Klopp Owens

6) JOIN IN

Try joining him and sharing ideas. Adapt your pacing/timing and affect to connect. I find most kids tend to get “stuck” due to a breakdown in comprehension and/or motor planning. Emotions also drive their ability to work through these moments. Maybe modeling the task he is doing and carefully expanding would also be helpful.

Sarah Weiler

I’d love to hear from you. How do you help your child get “unstuck”?

______

Read the first three chapters of my book HERE.

You’ll be hooked

Available at your local library or HERE.

An Excerpt from A REGULAR GUY: GROWING UP WITH AUTISM

That evening, Peter and I sat at the dining room table with a dictionary, a stack of encyclopedias, and an old college textbook on child development. It was time to do a little research.

“Echolalia: ech·o·la·li·a (?k’?-l?‘l?-?) 1. Psychiatry The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism.”

Autism?

I flipped open my World Book encyclopedia to autism, my heart pounding, and read out loud to Peter.

“A rare, severe developmental disorder that begins before four years of age. The condition appears as a group of symptoms, the most notable of which is the inability to relate socially to other people. True autism occurs in one child in every 700. Boys are more commonly affected than girls. There is no known cure for the condition. The term autistic or autistic like is sometimes used to describe people with severe emotional problems that resemble autism.”

There was more, but I couldn’t read it.

“Don’t worry, Laura,” said Peter, squeezing my hand. “This is just worst-case scenario stuff. There is no way Matthew is Pervasiveautistic.”

I had first heard the word “autism” when my sixth-grade class went to visit Agnews Developmental Center in Santa Clara, California, where children our age lived because they were emotionally disturbed, mentally ill, or developmentally disabled. I’m sure that the reason for the field trip was to educate us and infuse us with compassion, but instead the trip had a freak-show, haunted-house atmosphere. Students stared and pointed, and teachers seemed unsure, frightened.

During the tour I noticed a tall, handsome boy with a brown bowl haircut rocking in a doorway, mumbling quietly to himself and waving his fingers. He had high cheekbones and clear blue eyes, and he looked a little older than my twelve years, though it was hard to tell because his face was void of expression. It was spooky.

“He’s so handsome,” I whispered to the tour guide, “but it’s like he’s looking at me but not seeing me. What’s wrong with him?”

“He’s autistic,” she said. “People with autism are locked in their own world. They have no emotions, and they don’t like to be touched.”

I overheard one of the mothers who helped supervise the field trip whisper to another, “I hear it’s because they have refrigerator mothers—you know, those women who can’t love their children.”

That would never be me.

Years later, in 1988, the movie Rain Man was released, when Matthew was one and a half. In the movie Dustin Hoffman plays Raymond, a severely autistic man, obsessed with routine, who rocks and screams when his schedule is disrupted. He has difficulty making eye contact and mumbles amazing facts and figures that have no practical value. The character became the definition of autism, and everyone was talking about it when it first came out.

“Isn’t it amazing that autistic people are so brilliant with facts and numbers,” people would say, “but so limited otherwise, and so odd.”

Few understood that autism was a wide spectrum disorder, and that not all autistic people are alike. So when Peter and I met with the child psychologist who did testing for a consultation, even before we were seated, I blurted out that two professionals had used the word echolalia.

“Does that mean he’s autistic?” I asked.

“Echolalia is only one symptom of autism. A person with echolalia alone is not necessarily autistic.”

“Well, that’s a relief!” I said with a sigh.

“We’ve been a couple of wrecks,” Peter said, taking my hand. “It’s so hard not to jump to conclusions!”

Dr. Davies, a stoic English woman in her sixties, gave us no indication that it was time to celebrate as she looked over the speech therapist’s report. She asked us about pregnancy and birth (normal, normal) and asked us to list the ages of achievement of important milestones. I rattled them off like a contestant on a quiz show.

“I think she’s sugarcoating them a little,” Peter said, and I blushed.

“Oh, that’s what we mothers do,” said Dr. Davies with a slight smile, her eyes connecting briefly with mine. She understood.

Dr. Davies explained that she would use the results from two different tests, the Stanford-Binet Intelligence Scale (SB) and the Bayley Scales of Infant Development (BSID), to get the best reading of Matthew’s stage of development. The results would also highlight the areas where Matthew could use remediation.

The testing was done over a two-day period, and each day, Matthew clung to me for a few minutes before allowing Dr. Davies to take his hand and lead him into her office.

“No refrigerator mother here!” I laughed nervously, wiping tears away as I turned over my boy for this clinical evaluation.

“We’ll be about 45 minutes,” she said with that slight sympathetic smile.

Peter and I met Dr. Davies a final time to go over the test results.

“He is not retarded, and he is not autistic,” she proclaimed. “His most obvious problem is that he has a serious language delay, but he also seems to have an overall cognitive delay. But this is secondary to his language delay, and no final diagnosis can be made until he works with a speech and language therapist.”

“So do you think that once he gets speech therapy, the cognitive part will come up?” I asked hopefully. “Do you think this is something he can overcome?”

Peter gave me a “don’t put words in her mouth” look.

“I don’t have a crystal ball. But extensive work with a speech and language therapist, and placement in a remedial preschool, is crucial.”

“I heard that you don’t see children beyond evaluation, but do you think he would benefit from seeing someone else?” I asked. “We have a family friend, Brian Hoffman, who has offered to see him. Do you know him?”

“Yes, Dr. Hoffman is wonderful,” she said, “but there are many in this area who treat children with developmental disabilities as well.”

Dr. Davies handed me a sheet with diagnostic information for our insurance and wished us luck.

Did she say disability? What happened to delay?

“My grandson Joey is three years old and he’s not talking and he doesn’t sleep. My daughter in law has had to pick him up from pre-school at least once a week because he has tantrums and is nearly impossible to soothe. He never plays with other children and I think he has autism, but my son says there is nothing wrong. I think he’s in denial. What should I do?”

Whether you have a friend or family member that you think has autism or something like it, you may be wrong, and even if you are right,you can’t force people to get help if they don’t think they need it.

There is a way, however, to start a conversation. Here is an example:

“You are doing such a great job raising Joey; I admire you so much. I know you’ve been struggling with his tantrums and his sleep and I’m worried about the toll it’s taking on you you. What can I do to help?”

This caring and non-threatening approach usually opens up an honest dialogue, but resist the compulsion to say “I think he has X” or “if he were my child, I’d do Y”. Instead, try this:

“I know you are doing your best. If you are worried, you owe to yourself to get some help with all of this. Even if it’s nothing, there is no downside to having Joey checked out. You’ll feel so much better knowing you’ve done all that you can.”

Then feel free to pass Joey’s mom to me.

I can point her in the right direction.

_____

Laura Shumaker is the author of A REGULAR GUY: GROWING UP WITH AUTISM

She is also a PROUD contributor to the THE THINKING PERSONS GUIDE TO AUTISM

Read Laura’s popular San Francisco Chronicle Autism Blog HERE.

The year was 1991, and Matthew was still just considered “delayed, probably not autistic,” and I was determined to help him catch up. One my strategies was to find him a friend “to get the social part going.”

Matthew was in what was called a “Special Day Class” with just 6 children with learning delays, and most of their parents were in the midst of obtaining diagnoses.

“Hello, Jane?” I said, “this is Matthew Shumaker’s mother. I was wondering if Charlie could come play at our house after school.”

I’ll never forget the day, after much pacing and practicing, that I mustered up enough courage to call the mother of one Matthew’s kindergarten classmates to arrange a play date.

The year was 1991, and Matthew was still just considered “delayed, probably not autistic,” and I was determined to help him catch up. One my strategies was to find him a friend “to get the social part going.”

Matthew was in what was called a “Special Day Class” with just 6 children with learning delays, and most of their parents were in the midst of obtaining diagnoses.

“Hello, Jane?” I said, “this is Matthew Shumaker’s mother. I was wondering if Charlie could come play at our house after school.”

Silence. 

Had the phone gone dead? Was I back in junior high asking Doug Lisser to a backwards dance? Or was Charlie’s mother trying to come up with an excuse. Was she offended because she felt her son was not as disabled as mine? Well, to heck with her. Who needed her? Charlie would be so lucky to have a friend like Matthew…

“Yes,” she said finally. “Shouldn’t I come, too? I mean, is it OK if I come too?”

For the next few years, Matthew, Charlie, Jane and I had “play-dates”. The boys didn’t interact much (if at all). On days when Charlie came to our house without his mother I was his playmate and I learned how to prepare his favorite snack, french fries arranged neatly on a white paper plate not touching the katsup and a glass of chocolate milk with a straw.

When Matthew went to Jane’s, I mean Charlie’s, she got out the watercolors and painted pictures of airplanes with him with him while her son lined up his dinosaurs.

“How did it go?” we would ask each other at pick up time, and we’d both lie and say “They were so cute together!”

Eventually, Charlie moved on from special to regular education classes. The needs and interests of our son’s changed, and so did our schedules.

Still, Jane and I stay in touch and share stories of our son’s ups and downs. Charlie was eventually diagnosed with Asperger syndrome and is considerably higher functioning than Matthew. Both boys, now in their 20′s, still struggle with “getting the social part going.”

Just recently, Jane and I were remembering the early days.

“The first time I called, you weren’t all that friendly,” I said. “I thought you were trying to come up with an excuse–that Matthew was more disabled than Alex and might be a bad influence.”

Jane burst out laughing in a crazy, mother on the edge kind of way.

“I was just in shock!,” she said, “No one had EVER invited Alex over for a play date. I was so damn lonely.I felt so isolated.”

I’ll bet that if you are the parent of a child with an autism spectrum disorder, you are nodding right now, maybe even reaching for a Kleenex. Go ahead, muster up your courage and make a few phone calls.

Somebody’s mother would be lucky to have a friend like you.

*****

.

Had the phone gone dead? Was I back in junior high asking Doug Lisser to a backwards dance? Or was Charlie’s mother trying to come up with an excuse. Was she offended because she felt her son was not as disabled as mine? Well, to heck with her. Who needed her? Charlie would be so lucky to have a friend like Matthew…

“Yes,” she said finally. “Shouldn’t I come, too? I mean, is it OK if I come too?”

For the next few years, Matthew, Charlie, Jane and I had “play-dates”. The boys didn’t interact much (if at all). On days when Charlie came to our house without his mother I was his playmate and I learned how to prepare his favorite snack, french fries arranged neatly on a white paper plate not touching the katsup and a glass of chocolate milk with a straw.

When Matthew went to Jane’s, I mean Charlie’s, she got out the watercolors and painted pictures of airplanes with him with him while her son lined up his dinosaurs.

“How did it go?” we would ask each other at pick up time, and we’d both lie and say “They were so cute together!”

Eventually, Charlie moved on from special to regular education classes. The needs and interests of our son’s changed, and so did our schedules.

Still, Jane and I stay in touch and share stories of our son’s ups and downs. Charlie was eventually diagnosed with Asperger syndromeand is considerably higher functioning than Matthew. Both boys, now in their 20′s, still struggle with “getting the social part going.”

Just recently, Jane and I were remembering the early days.

“The first time I called, you weren’t all that friendly,” I said. “I thought you were trying to come up with an excuse–that Matthew was more disabled than Alex and might be a bad influence.”

Jane burst out laughing in a crazy, mother on the edge kind of way.

“I was just in shock!,” she said, “No one had EVER invited Alex over for a play date. I was so damn lonely.I felt so isolated.”

I’ll bet that if you are the parent of a child with an autism spectrum disorder, you are nodding right now, maybe even reaching for a Kleenex. Go ahead, muster up your courage and make a few phone calls.

Somebody’s mother would be lucky to have a friend like you.

*****

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.

My 19 year old son's 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. 

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.

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.

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?

A defiant and angry Kerry at 6 years old

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 Magro Today

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