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

What was going on that day? Oh yeah…

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

Why to we act the way we do?

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

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

Cashier at 7/11: “May I help you?”

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

Why do we behave this way?

a)We aren’t sleeping

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

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

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

Why?

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

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

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

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

Why do we behave this way?

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

b) We’re tired

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

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

Why do we behave this way?

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

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

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

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

a) We know how it feels to be whispered about

b) We learn that everyone has a story

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

God bless us, and God bless our kids!

***

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

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

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

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

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

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

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

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

I’ll never forget it.

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

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

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

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

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

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

“So do I,” said Mom. “So do I.”

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If you’d like to keep reading CLICK HERE.

March is Disability AWARENESS month. Get involved HERE.

“You must be so excited.” commented a nice grandmotherly type.

“You’ll learn that one of the best things about being a mother is the wonderful new friends that you’ll make!”

Several months later, I took my blond baby boy to his first Gymboree session, hoping that the wise woman at the bookstore was right. But while my prospective friends and their babies huddled and exchanged phone numbers, Matthew crawled away to a corner, preferring to play with the wheels on a rolling board, and nothing else. It was the first time I felt truly isolated as a mother but it would not be the last.

Dreamy Matthew, age one

Parenting a child with autism or other developmental disabilities can be lonely. When our children aren’t connecting, we aren’t either.

So what’s the solution? Here are some suggestions based on my experience–some obvious, others not so obvious:

1) Find autism advocacy and parent groups. Volunteer for Special Olympics and learn how your child can get involved. Special Olympics is also a great place for your typically developing children to volunteer and find support.

2) Join a gym, make a habit of going and take a variety of classes. The exercise part (endorphins and all) will keep you sane and you’ll meet a lot of nice people. Most places have childcare and with any luck, you’ll find a helper at the gym that is so great with your child that you can hire them to babysit for you so that you can…

3) Take a class. I took writing classes and joined writing groups because I like to write. What do you like to do? What have you always wanted to do? Learn about it.. Join a group and exchange ideas about it. Do something that has nothing to do with autism.

4) Get a dog. You meet great people at dog parks, at obedience training and on walks. Dogs are sweet and loving and they worry about you when no one else does.

5) Get to know your neighbors. They have noticed that you have your hands full but are curious about you and would like to get to know you. Invite them over and encourage them to ask questions about your child. Neighbors make the best friends.

If you are still stumped and lonely after reading this, let me know. I will do my very best to help you.

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.

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 one I know I am so lucky have.  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.

The Golden Hat Foundation

I was reminded of this when I learned about a new documentary,  narrated by Kate Winslet “A Mother’s Courage: Talking Back to Autism,” about a young nonverbal Icelandic boy named Keli. Kate was moved by the efforts of Keli’s mom, Margret Ericsdottir, to find a way for her son to learn to communicate. “I simply couldn’t conceive of how devastating it would be,”Kate said, “not to be able to hear my children’s voices.”

Kate and Margret bonded through the production of the documentary, and brainstormed ways to help children like Keli and The Golden Hat Foundation was born.

I learned about the Golden Hat Foundation when I was invited to take part in a luncheon with other (amazing) autism advocates and bloggers at the offices of Ladies Home Journal. (I joined by phone, along with esteemed West Coast advocates Shannon des Roches Rosa,Jennifer Byde Myers and Chantal Kira Sicile.) Kate Winslet is on the cover of this months Ladies Home Journal, which was just redesigned and looks fantastic inside and out.

The Golden Hat Foundation is a non-profit organization dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable.

The mission of the Golden Hat Foundation is the establishment of innovative campuses that offer people with autism the opportunity to learn to communicate effectively, receive an education, job training and enjoy recreational activities, all within a supportive social network.

Kate Winslet has given the Golden Hat Foundation an inspiring head start with , “The Golden Hat: Talking Back to Autism,” a book that weaves together  the story of Margret and Keli, their  friendship with Kate and photographs of well known celebrities self portraits wearing Kate’s hat.

“Put the hat on your head and think about how much we takes communication for granted,” she told them. “How would you communicate who you are in a quote? What would the words be? Express something that’s important to you.”

One of  my favorite quote came from Justin Timberlake–”In life, try on as many hats as you can. You might actually find one that fits.”

The list of 100 photographs also includes Meryl Streep, Leonardo DiCaprio, ElijahWood, Tom Hanks, and Conan O’Brien. All proceeds from this book will benefit the Golden Hat Foundation.

If you’d like to support the Golden Hat Foundation, click here. I think it is a *really* good idea that parents support initiatives like this as early as possible. The future is not as far away as you think!

You can pre-order the book here.

WHAT WOULD YOUR QUOTE BE?

I want to know.

Mine would be ” I am grateful to be a mother.”

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Read the first three chapters of A REGULAR GUY: GROWING UP WITH AUTISM HERE.

You’ll be hooked

______

Matthew was pre-school age right around the time he was being evaluated for a “developmental delay” (so of course we thought that mean he could catch up!) A specialist recommended that we enroll him in a “remedial preschool” but we weren’t so sure. We thought that if he went to a school with the “regular” kids he’d model what they were doing developmentally and socially and that we’d all live happily ever after.

Adrienne weighs in:

Should I send my child to specialized preschool, or to one with typically developing kids?

It’s very hard for working parents to make this decision.  Many specialized preschools only operate for half a day, or fewer hours than traditional preschool/day care settings.  Enrollment in a specialized preschool can cause a logistical nightmare for parents who work full time, especially those who don’t work in the same town in which they live.  However, whenever possible, it’s a good idea to try the specialized preschool.  Research shows that the earlier the intervention, the greater likelihood of success.  It’s easier to progress out of a specialized setting than to transition into one after being in a regular environment for awhile. Also, special education programs provided through the district are free and offer therapies and specialized academic and behavioral training by certified professionals.  Most regular preschool settings don’t have staff that have a comparable level of training.

When specialized preschool only is not a viable option, an inclusion program (combination of typically-developing kids and children with special needs), or a mix of a part-time special education program and part-time regular program may be a possibility.  It’s important that the programs are a good match for your child, and that the peers in each program have similar strengths and needs.

_________

Right about now, most parents of special needs children are frantically filling out camp forms, waiting in lines, and agonizing over ways to build structure into the 60 long days of summer.

Roseann to the rescue:

I dread summer. Help me? Please?

Some children who have autism qualify for an extended school year program (ESY).  This lasts most of the summer, continuing programming to prevent regression.  For those who do not qualify and for those summer “gap” weeks without any school, what does a family do with a child with autism? The child is used to structured and purposeful activities. Sometimes the schools offer recreation programs to fill those gaps. There are camps that occur during those time periods, but families should register very early because these dates fill up fast. Public and private recreation programs and public libraries offer plenty of things for kids during the summer. Families need to know that these are open for kids on the spectrum as well.  Child care providers are also mandated by law to include children of all abilities. The inclusion part is another issue, as these providers are till learning what to do and how to make it all work together.  I encourage education and awareness as much as possible – both of the organizations and the general public. I also encourage shared resources as so many organizations are struggling with financial challenges.  Shared knowledge and shared resources can make for more inclusive communities with supports for families during these long days of summer.  For those who’s child qualifies for the ESY program, it’s a bit easier.  But sometimes hours are shorter.  It is helpful for families to look for a qualified child care providers, therapist, tutor, or someone who can spend some time with the child during the unstructured hours.  There are often college students in the special education field who are home for the summer who have spare time who are willing to work in this manner for income and experience. For all families, there’s always the dreaded one or two weeks in August after ESY ends. Many families reserve these weeks for family vacations as finding services during this time period is often difficult.

_____

Adrienne P. Robertiello, Autism Educator at Children’s Specialized Hospital also facilitates the participation of individuals with autism and their families within community settings. Her involvement has included numerous community service projects including educating and communicating resources in such areas as community awareness and inclusion, safety and emergency preparedness, and inclusive ministries. She co-developed Libraries and Autism – We’re Connected, providing information, tools, resources, and practical ways of inclusive/supportive library services. Through the generous funding of Kohl’s Department Stores, Adrienne has developed and implemented Make Friends with Autism, a nationwide community outreach initiative.

CLICK HERE to see Adrienne’s latest project, Friends Like You. Friends Like Me for which she is particularly proud.

Dr. Roseann Pagano Pizzi is the psychology supervisor at Children’s Specialized Hospital. She specializes in assessment of children with autism spectrum disorders and oversees a department of psychologists and psychotherapists who treat children with a variety of mental health needs. She is adjunct professor at Seton Hall University, where she teaches graduate courses in clinical and counseling psychology.

They are lucky to be working at Children’s Specialized Hospital as it has been ranked in the Top 25 Best Places to Work in New Jersey by NJ BIZ and ranked in the Top  100 Best Healthcare Employers by Modern Healthcare, one of only four children’s hospitals in the nation to achieve
this recognition.

To learn more about the Autism program at Children’s Specialized Hospital, CLICK HERE.

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Read the first three chapters of A REGULAR GUY: GROWING UP WITH AUTISM HERE.

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.

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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.