Dentist #2

It is that time again when Adam had to go back to the dentist.

His seizure medicine makes his teeth brittle and we have had a terrible time with his eating so we are hoping that the dentist can give us a little insight and suggestions into what would be the best route to take with Adam's teeth.

Practical Oral Care with Children that have Autism

Providing oral care to people with autism requires adaptation of the skills you use every day. In fact, most people with mild or moderate forms of autism can be treated successfully in the general practice setting. This booklet will help you make a difference in the lives of people who need professional oral care.

Autism is a complex developmental disability that impairs communication and social, behavioral, and intellectual functioning. Some people with the disorder appear distant, aloof, or detached from other people or from their surroundings. Others do not react appropriately to common verbal and social cues, such as a parent's tone of voice or smile. Obsessive routines, repetitive behaviors, unpredictable body movements, and self-injurious behavior may all be symptoms that complicate dental care.

Autism varies widely in symptoms and severity, and some people have coexisting conditions such as intellectual disability or epilepsy. They can be among the most challenging of patients, but following the suggestions in this booklet can help make their dental treatment successful.
Making a difference in the oral health of a person with autism may go slowly at first, but determination can bring positive results and invaluable rewards.

Before the appointment, obtain and review the patient's medical history. Consultation with physicians, family, and caregivers is essential to assembling an accurate medical history. Also, determine who can legally provide informed consent for treatment.

COMMUNICATION PROBLEMS and MENTAL CAPABILITIES are central concerns when treating people with autism.

Talk with the parent or caregiver to determine your patient's intellectual and functional abilities, and then communicate with the patient at a level he or she can understand.
Use a "tell-show-do" approach to providing care. Start by explaining each procedure before it occurs. Take the time to show what you have explained, such as the instruments you will use and how they work. Demonstrations can encourage some patients to be more cooperative.

BEHAVIOR PROBLEMS --which may include hyperactivity and quick frustration--can complicate oral health care for patients with autism. The invasive nature of oral care may trigger violent and self-injurious behavior such as temper tantrums or head banging.
Plan a desensitization appointment to help the patient become familiar with the office, staff, and equipment through a step-by-step process. These steps may take several visits to accomplish.
Have the patient sit alone in the dental chair to become familiar with the treatment setting. Some patients may refuse to sit in the chair and choose instead to sit on the operator's stool.
Once your patient is seated, begin a cursory examination using your fingers.
Next, use a toothbrush to brush the teeth and gain additional access to the patient's mouth. The familiarity of a toothbrush will help your patient feel comfortable and provide you with an opportunity to further examine the mouth.

When the patient is prepared for treatment, make the appointment short and positive.
Pay special attention to the treatment setting. Keep dental instruments out of sight and light out of your patient's eyes.

Praise and reinforce good behavior after each step of a procedure. Ignore inappropriate behavior as much as you can.

Try to gain cooperation in the least restrictive manner. Some patients' behavior may improve if they bring comfort items such as a stuffed animal or a blanket. Asking the caregiver to sit nearby or hold the patient's hand may be helpful as well.

Use immobilization techniques only when absolutely necessary to protect the patient and staff during dental treatment--not as a convenience. There are no universal guidelines on immobilization that apply to all treatment settings. Before employing any kind of immobilization, it may help to consult available guidelines on federally funded care, your State department of mental health/disabilities, and your State Dental Practice Act. Guidelines on behavior management published by the American Academy of Pediatric Dentistry (http://www.aapd.org/ Exit Disclaimer) may also be useful. Obtain consent from your patient's legal guardian and choose the least restrictive technique that will allow you to provide care safely. Immobilization should not cause physical injury or undue discomfort.
If all other strategies fail, pharmacological options are useful in managing some patients. Others need to be treated under general anesthesia. However, caution is necessary because some patients with developmental disabilities can have unpredictable reactions to medications.

People with autism often engage in perseveration, a continuous, meaningless repetition of words, phrases, or movements. Your patient may mimic the sound of the suction, for example, or repeat an instruction over and again. Avoid demonstrating dental equipment if it triggers perseveration, and note this in the patient's record.


UNUSUAL RESPONSES TO STIMULI can create distractions and interrupt treatment. People with autism need consistency and can be especially sensitive to changes in their environment. They may exhibit unusual sensitivity to sensory stimuli such as sound, bright colors, and touch. Reactions vary: Some people with autism may overreact to noise and touch, while exposure to pain and heat may not provoke much reaction at all.

Use the same staff, dental operatory, and appointment time to sustain familiarity. These details can help make dental treatment seem less threatening.

Minimize the number of distractions. Try to reduce unnecessary sights, sounds, odors, or other stimuli that might be disruptive. Use an operatory that is somewhat secluded instead of one in the middle of a busy office. Also, consider lowering ambient light and asking the patient's caregiver whether soft music would help.

Allow time for your patient to adjust and become desensitized to the noise of a dental setting. Some patients may be hypersensitive to the sound of dental instruments.
Talk to the caregiver to get a sense of the patient's level of tolerance. People with autism differ in how they accept physical contact. Some are defensive and refuse any contact in or around the mouth, or cradling of the head or face. Others find such cradling comforting.
Note your findings and experiences in the patient's chart.


UNUSUAL AND UNPREDICTABLE BODY MOVEMENTS are sometimes observed in people with autism. These movements can jeopardize safety as well as your ability to deliver oral health care.

Make sure the path from the reception area to the dental chair is clear.
Observe the patient's movements and look for patterns. Try to anticipate the movements, either blending your movements with those of your patient or working around them.

SEIZURES may accompany autism but can usually be controlled with anticonvulsant medications. The mouth is always at risk during a seizure: Patients may chip teeth or bite the tongue or cheeks. People with controlled seizure disorders can easily be treated in the general dental office.
Consult your patient's physician. Record information in the chart about the frequency of seizures and the medications used to control them. Determine before the appointment whether medications have been taken as directed. Know and avoid any factors that trigger your patient's seizures.

Be prepared to manage a seizure. If one occurs during oral care, remove any instruments from the mouth and clear the area around the dental chair. Attaching dental floss to rubber dam clamps and mouth props when treatment begins can help you remove them quickly. Do not attempt to insert any objects between the teeth during a seizure.
Stay with your patient, turn him or her to one side, and monitor the airway to reduce the risk of aspiration.

Record in the patient's chart strategies that were successful in providing care. Note your patient's preferences and other unique details that will facilitate treatment, such as music, comfort items, and flavor choices.


Oral Health Problems in Autism and Strategies for Care

People with autism experience few unusual oral health conditions. Although commonly used medications and damaging oral habits can cause problems, the rates of caries and periodontal disease in people with autism are comparable to those in the general population. Communication and behavioral problems pose the most significant challenges in providing oral care.

DAMAGING ORAL HABITS are common and include bruxism; tongue thrusting; self-injurious behavior such as picking at the gingiva or biting the lips; and pica--eating objects and substances such as gravel, cigarette butts, or pens. If a mouth guard can be tolerated, prescribe one for patients who have problems with self-injurious behavior or bruxism.

DENTAL CARIES risk increases in patients who have a preference for soft, sticky, or sweet foods; damaging oral habits; and difficulty brushing and flossing.
Recommend preventive measures such as fluorides and sealants.

Caution patients or their caregivers about medicines that reduce saliva or contain sugar. Suggest that patients drink water often, take sugar-free medicines when available, and rinse with water after taking any medicine.
Advise caregivers to offer alternatives to cariogenic foods and beverages as incentives or rewards.
Encourage independence in daily oral hygiene. Ask patients to show you how they brush, and follow up with specific recommendations. Perform hands-on demonstrations to show patients the best way to clean their teeth. If appropriate, show patients and caregivers how a modified toothbrush or floss holder might make oral hygiene easier.

Some patients cannot brush and floss independently. Talk to caregivers about daily oral hygiene and do not assume that they know the basics. Use your experiences with each patient to demonstrate oral hygiene techniques and sitting or standing positions for the caregiver. Emphasize that a consistent approach to oral hygiene is important--caregivers should try to use the same location, timing, and positioning.

Tips for caregivers are available in the booklet Dental Care Every Day: A Caregiver's Guide, also part of this series.


PERIODONTAL DISEASE occurs in people with autism in much the same way it does in persons without developmental disabilities.

Some patients benefit from the daily use of an antimicrobial agent such as chlorhexidine.
Stress the importance of conscientious oral hygiene and frequent prophylaxis.


TOOTH ERUPTION may be delayed due to phenytoin-induced gingival hyperplasia. Phenytoin is commonly prescribed for people with autism.


TRAUMA and INJURY to the mouth from falls or accidents occur in people with seizure disorders. Suggest a tooth saving kit for group homes. Emphasize to caregivers that traumas require immediate professional attention and explain the procedures to follow if a permanent tooth is knocked out. Also, instruct caregivers to locate any missing pieces of a fractured tooth, and explain that radiographs of the patient's chest may be necessary to determine whether any fragments have been aspirated.
Physical abuse often presents as oral trauma. Abuse is reported more frequently in people with developmental disabilities than in the general population. If you suspect that a child is being abused or neglected, State laws require that you call your Child Protective Services agency. Assistance is also available from the Childhelp® National Child Abuse Hotline at (800) 422-4453 or the Child Welfare Information Gateway (http://www.childwelfare.gov/).


Making a difference in the oral health of a person with autism may go slowly at first, but determination can bring positive results--and invaluable rewards. By adopting the strategies discussed in this booklet, you can have a significant impact not only on your patients' oral health, but on their quality of life as well.

Additional Readings

Hyman SL, Towbin K. Autism Spectrum Disorders.  In Batshaw ML, Pellegrino L, Roizen NJ (eds.). Children with Disabilities (6th ed.).  Baltimore, MD: Paul H. Brookes Publishing Co., 2007.

National Institute of Child Health and Human Development, National Institutes of Health (NIH). Autism Questions and Answers for Health Professionals. Retrieved July 9, 2009, from
http://www.nichd.nih.gov/health/topics/autism/conditioninfo/Pages/default.aspx​.
National Institute of Child Health and Human Development, National Institutes of Health (NIH).  Autism Spectrum Disorders.  Retrieved July 9, 2009, from
http://www.nichd.nih.gov/health/topics/asd.cfm.

NLM Family Foundation.  D-Termined program of repetitive tasking and familiarization in dentistry: a behavior management approach.  View at
http://www.nlmfoundation.org/media.htm Exit Disclaimer.

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For more information about autism, contact

National Institute of Child Health and
Human Development Information Resource Center
P.O. Box 3006
Rockville, MD 20847
(800) 370-2943
http://www.nichd.nih.gov/
NICHDInformationResourceCenter@mail.nih.gov
ACKNOWLEDGMENTS
The National Institute of Dental and Craniofacial Research thanks the oral health professionals and caregivers who contributed their time and expertise to reviewing and pretesting the Practical Oral Care series.

Expert Review Panel
Mae Chin, RDH, University of Washington , Seattle, WA
Sanford J. Fenton, DDS, University of Texas, Houston, TX
Ray Lyons, DDS, New Mexico Department of Health, Albuquerque, NM
Christine Miller, RDH, University of the Pacific, San Francisco, CA
Steven P. Perlman, DDS, Special Olympics Special Smiles, Lynn, MA
David Tesini, DMD, Natick, MA
This booklet is one in a series on providing oral care for people with mild or moderate developmental disabilities. The issues and care strategies listed are intended to provide general guidance on how to manage various oral health challenges common in people with autism.

Other booklets in this series:
Continuing Education: Practical Oral Care for People With Developmental Disabilities
Practical Oral Care for People With Cerebral Palsy
Practical Oral Care for People With Down Syndrome
Practical Oral Care for People With Intellectual Disability
Wheelchair Transfer: A Health Care Provider's Guide
Dental Care Every Day: A Caregiver's Guide

Prayer is Essential.

Earlier, when I was speaking with a neighbor, I was struck by an answer to a question that I gave him. I asked, "Did you pray about it?" His response was, "No"

I stood there for a second and had to think about what he had said. You see Prayer, is essential, it is the single most powerful resource that we have in this life and yet most people turn to it only as a last resort or not even at all.

Instead of talking to people, we need to be talking to God. It is good to have people to turn to when we need someone but God is waiting for you and He actually has the answers.

I have taught my kids to pray.  They spend time themselves not because I ask them too but because they want to spend time in prayer with God.  Adam, my son who has autism has a sweet, gentle spirit who loves God and never wants to break God's heart.  It is the guiding force that guides his life and I can see God in the things he does daily, same for my daughter.  She has a passion to serve God and she does not care who does not like it, it is her faith, between her and God and she spends time in prayer with our Heavenly Father.

When we come to Jesus, after the Holy Spirit calls us and convicts us it is our prayer that literally is the dunamis (Dynamite) that destroys the utter darkness and despair of our sin ridden soul and seals us unto new life. So, how can you not pray?

I asked him how often he did actually pray and he said, "from time to time" That is the problem friend's. If you expect God to move on and in your behalf you have to have a relationship with Him. You have to know Him and you are not going to know Him if you Neve go to Him in prayer. How else would you know that He could solve your problems, that He has given you Victory, that He has delivered you from darkness. He is the tap that gives you refreshing life, power and substance.

Take time this evening to call out on Him. Spend time with Him in prayer not as a last resort but daily. I can promise you this, if you do you will see your life start to change. There is power in prayer and seeking out God who is the sustainer of our faith, our soul and our hope.

Summer Fun and Camps for kids with Autism

Once the school year is over, many families with children on the autism spectrum are stumped. Even if your child qualifies for Extended School Year programs, those programs are limited in length and unlikely to include fun recreational activities.

Luckily, quite a few camps cater to kids with autism. Less luckily, many of the camps listed in the directories listed below are quite expensive. To find day camps and/or less expensive options, check your local camp listings and fairs, and be sure to contact your local YMCA and/or Jewish Community Center (JCC).

• Federation for Children with Special Needs (Northeastern United States)

The Federation for Children with Special Needs has collected a set of linked camp listings for various disorders. While there is a set of camps that are specifically for kids with autism, it's worthwhile reviewing those that cater to kids with learning disabilities, intellectual disabilities, and other issues that might overlap your child's specific areas of challenge.

• OASIS Camp Listings for Kids with Asperger Syndrome

OASIS is a comprehensive website for Asperger Syndrome, and their camp listings are fairly extensive. Be aware that they do skew toward programs that are appropriate for higher functioning kids. 

Autism Summer Camp

www.summitcamp.com

Summer Camp for children with mild emotional concerns. Ages 7-17

• Easter Seals Summer Camps

Easter Seals provides summer camps and recreational programs for children and adults of all abilities. These programs are geared solely to people with special needs, which means they are not inclusive. 

• The Center for Children with Special Needs (Northwest United States)

Search by type of camp and type of disability to find the right match for your child. These camps are largely in the state of Washington or nearby. 

• Very Special Camps

Very Special Camps is a website dedicated entirely to listings of special needs camps. They list several dozen camps around the country that are specifically dedicated to kids on the autism spectrum. 

• YMCA Camps

YMCA camps are not specifically geared to special needs, but most will work hard to find a way to include your child. If you're more interested in day camp than residential camp, contact your local YMCA. If you have both typically developing and autistic kids, both can attend a Y camp -- and, even better, both you and your kids can take part in year-round Y activities. 

• Kids' Camps Directory: Camps for Kids with Autism/Aspergers

This is another general camp directory, but it includes an impressive collection of camps and programs specifically geared to kids on the autism spectrum. Search by state. 

• Jewish Community Center (JCC) Camps

Like the YMCA, the JCC strives to include people of all abilities in its programs. Some JCC camps (like the one in Medford, N.J.) have terrific support for inclusion. Others are more than willing to admit your child with a 1:1 aide. And some will work with you to include your child without special support.  While JCC camps are nominally Jewish, all are open to youngsters from any religious background. To find a local JCC camp, call your local JCC. 

• Wilderness Inquiry Family and Youth Programs

I've never experienced this organization's special needs family wilderness programs, but gave them a call and found that they are knowledgeable about and accommodating to the needs of autistic people. Accommodations include picture boards and visual supports, special menu planning, and up-front interviews with families to ensure that all needs are met.

The following is a list of camps that might be beneficial to your child if he/she has autism.

4-H Camp Bristol Hills

Abenaki-Mascoma Day Camp

Abington Parks and Recreation Department

AccesSport America

ADA Camp Carefree

Adaptive Sports Center

Adventurelore Programs

Adventure Zone Inc.

Agassiz Village

Aspire Summer Camp

Bear Hill 4H Camp

Berkshire Hills Music Academy Summer Program

Berwick Boys Foundation

Boys Scouts of America

Breezy Hill Farm

Bridgewater Recreation Commission

Camp Agassiz

Camp Allen

Camp An-Se-Ox

Camp Aspetuck

Camp Barrington

Camp Burgess & Hayward

Camp Calumet

Camp Candlewood

Camp CaPella Inc.

Camp Carlson

Camp Cedar Hill

Camp Chickami

Camp Clark

Camp Common Ground

Camp Communicate

Camp Coniston, Inc.

Camp Connolly

Camp Discovery

Camp Echo Bridge

Camp Edith Read

Camp Emerson

Camp Encore Coda

Camp Farley

Camp Farnsworth

Camp Fatima

Camp Favorite

Camp Fire USA, Eastern Massachusetts Council

Camp Frank A Day

Camp Habonim

Camp Half Moon

Camp Harkness

Camp Harrington

Camp HASC

Camp Horizons, Inc.

Camp Howe, Inc.

Camp Huntington

Camp Jabberwocky

Camp Jewell YMCA

Camp Joy

Camp Kaleidoscope

Camp Katoya

Camp Kee-wanee

Camp Laurel

Camp Lawrence

Camp Lawroweld

Camp Lewis Perkins

Camp Lincoln

Camp Marshall

Camp Massapoag

Camp Massasoit

Camp Maude Eaton

Camp Mechuwana

Camp Merrie-Woodv

Camp Nokomis

Camp Northwood

Camp Otter

Camp Pattagansett

Camp Pennacook

General Disability Cont'd

 

Camp Pikati

Camp Pine Cone

Camp Polliwog

Camp Putnam

Camp Ramapo

Camp Rice Moody

Camp Runels

Camp S.T.A.R. (Supporting Therapeutic & Accessible Recreation)

Camp Sangamon

Camp Satucket

Camp STAR

Camp Susan Curtis

Camp Thorpe

Camp Timber Trails

Camp Timbercrest

Camp Triumph

Camp Twin Hills

Camp Virginia

Camp Wapanacki

Camp Watchaug

Camp Waziyatah

Camp Wee-Kan-Tu

Camp West Woods

Camp Wind in-the-Pines Girl Scout Camp

Camp Winnetaska

Camp Woodhaven

Camp Yomechas

Center Church Camp Asto Wamah

Clover Patch Camp

Duxbury Bay Maritime School/AccessSail

Easter Seals Camp Hemlocks

Easter Seals Summer Camps

Exploration Summer Program

Grotonwood General

Gresh Academy West Hills Day Camp

Harbor Explorers at Piers Park Sailing Center

Harbor Hills Day Camp

Hillside School Summer Term

Inly School Day Camp

Kettleford Day Camp

Lions Camp Pride

Madden Open Hearts Camp

Maplewood Country Day Camp

Mascoma Day Camp

Med O Lark

Newton Therapeutic Recreation Program

Nobles Day Camp

Oceanwood

Onyahsa

Outdoor Explorations

Outward Bound U.S.A.

Pequossett Summer Program

Performing Arts Center of Metrowest

Pinewoods Dance Camp

Playball Baseball Camp

Polliwog Creative Arts Camp

Ponkapoag Outdoor Camp

Raynham Parks and Recreation Department

Rolling Ridge

Roxbury YMCA

Search Beyond Adventures

Seawood Day Camp

Seeds of Peace

Somerville YMCA

South Shore YMCA Camps

Student Hostelling Program, Inc.

Summer Camp Hale Reservation

Summer Youth Sailing Program

Techgirlz

The Bridge Center Summer Camps

The Drama Play Connection

The Giving Camp

The Guided Tour, Inc.

The Paul Center for Learning and Recreation

The Summer Camp, Inc.

Tiny Tadpoles

UNH 4H Camps

Universal Access Program

Variety Club Camp and Developmental Center

West Suburban YMCA

Whispering Pines Day Camp

Windsor Mountain Summer Camp-Deaf Plus

YWCA

[back to category list]

HIV/AIDS

 

Camp Amerikids

Intellectual Disabilities

Camp Akeela

Camp Bar Tovi

Camp Chazak

Camp Huntington

Camp Lee Mar

Camp Little Notch

Camp Pinecrest

Camp Tova

Confidence Connection

Confidence is Cool Summer Camp

Katy Isaacson Elaine Gordon Lodge

Neil Klatskin Day Camp

Pine Tree Camp

Sprout, Inc.

The Charles River Center

Variety Club Camp and Developmental Center

Wediko New Hampshire Summer Program

Learning Disabilities

Camp Huntington

Camp Lee Mar

Camp Maple Leaf

Camp Sequoia

Camp Shriver at Umass

Camp Starfish

Confidence Connection

Eagle Hill Summer Program

Landmark School Summer Program

Linden Hill Summer Program

Ramapo Anchorage CampRiverview Summer Program

SOAR

Summer@Carroll

The Learning Camp

The Summit Camp

Wediko New Hampshire Summer Program

Helping children with Asperger’s and other autism spectrum disorders to deal with losing and disappointment

I am a firm believer in using social tools to help with children with Autism.  With Adam, when trying to potty train him we wrote a social book and would read it to him about going to the bathroom.  He got comfortable with the story and then he felt comfortable enough to use the bathroom.

We also use charts to help re-enforce his feelings and behaviors.  We found that this is quite effective.

Children with ASD often have particular problems with losing: Not getting their way, not being first, not being chosen or called on, not winning.  Here are some reasons for this.

First, their lack of perspective-taking abilities can make children with ASD less aware of unwritten social agendas: others also want to be first; others like to win, too.

Second, many children with autism struggle with problems regulating upsetting emotions.

Third, lots of kids with ASD have tough lives day to day.  When something does not go their way, it might be the last straw in a long string of deeply frustrating experiences.

I have included some of the signs we use and have placed in Adam's room.  WE also created feeling charts that encourage them to use their words instead of acting out their emotions in a destructive way.

An Autism Mom's Heart

As parents of a child with Autism, you often feel alone when it comes to the issues you find yourself dealing with.  However, there is a joy in the surrender of parenthood and doing everything you possibly can to make sure that they have the best life possible.

I came across an interesting post from a mother who posted about her child and autism and thought I would share it with you.  It was a good read.

Our heart is a delicate thing.

Physically, it is deep within our bodies, cradled by the ribs to protect it, cushioned by organs to keep safe. It is the centre of our core.

Not surprising, emotionally, the heart is almost a mirror image.

It is said to be the “heart” of us, the stabilizing item that holds what is most dear to us, memories that will never fade, most dreamed of hopes and fears, and within all of that is what we value most -our children.

Lincoln is my oldest son and so I have not ever known what it is like to love a child that does not have Autism. Even before diagnosis it was there, and so I cannot comment on whether it is different. I am glad for that too.

It isn’t that I am fearful I might have loved a non-autism child “more” or different, it is simply that I am glad to have had no predisposition thoughts on what Motherhood entailed.

I actually count myself lucky for not knowing that this was just all of the ‘Motherhood package”. I believe that the difficult, confusing and uncomfortable issues that showed themselves at 3 or 4 as “autistic traits” where just accepted as childhood and that itself was a blessing because I never questioned them. I did not complain. I did not search for answers or ways to curve the behavior. With acceptance came the best gift I could give my growing son…room to grow and be himself!!

In some ways Lincoln was a much easier baby and toddler. He loved to curl up and nap with me while I carried his younger brother. At 10 months of age I was pregnant again and the 2 hr naps each afternoon really helped! Lincoln would nestle against me, pull my arms tightly around him (the same way each day…if I had not been too exhausted to notice) and fell instantly asleep. 2 hrs later, he woke.

When the new baby came I NEVER had to worry about him touching or hurting him. I did not notice, but at 17 months LInc had no interest in other kids. If the baby cried, he just went about his playing. He never really bother with him, but he did not ignore the baby. IT had it’s place and he had his. He was never jealous…after the 3 and 4th boys came I realized this as Hawkin (#3) tried to move his little brother from my chest as I fed him so he could climb up on my lap!! He never felt slighted. He knew his place, and there was no reason to worry.

The Mom of an autistic child though does deal with just a bit more emotional baggage.

On this Mothers day as I read the sentences my 7 yr old wrote for me: I love my Mom because…. “she lays with me when I am scared, She gives me hugs, she is my best friend” and I know that no matter how HARD it was (and it was) that it was always WORTH IT.

There are and were times when I felt alone. I was alone. People have a hard time with Autism. They don’t mean to, they don’t want to even, but it is unknown, and ugly sometimes. The oddness, the meltdown, the extra work.

Autism hurts a relationship. It makes parents angry at times, they mostly blame themselves but it richocets back to hurt the people closest to you heart. Spouse, other chlidren, parents, friends.

It can be fixed. It can be reflected, it can be over come. Don’t  give up. Perseverance is key.

A Mom of autism always has a delicate heart.

She will never show it, but her heart hurts to make her child happy. Her heart aches for the life she expected her child to have. Her heart wants so desperately to protect her child..but it is just a heart, and can only do so much. That fact, the trueness that love does have some limits, makes her heart sad.

Luckily for her, her heart will glow and mend each time her child exceeds the expectation of ‘society’ the expectations of her family, friends, schools, support workers. Her heart will soar when her child smiles, and frolicks and plays and laughs with other kids or parents, or friends.

The same people who judge in silence.

I love ALL my kids beyond reason, beyond the level I ever thought possible. It is mind-blowing. I do though, have a very special corner of my heart for my Lincoln because I know our bond is just a little ‘more’ then the others and he might just possibly need me just a little more.

I still expect him to some day spread his wings and fly from our nest like the others but I think my tears might just be a tad more bittersweet. Happy Mother’s Day!

Dealing with Autism Care Considerations

As a general rule, we never leave our children with anyone.  Other than family and for only a short period of time at that.  Where we go our children go with us.  Not just because Adam has Autism but because we were always taught that a family that prays together stays together and a family that stays together goes far.....

You can't trust just anyone to watch a child with Autism nor a healthy child who is full of energy like my daughter.  So we just care for them ourselves and if we go anywhere they go with us.  We recently had our anniversary and some people were shocked that we decided to go out as a family and celebrate our anniversary instead of offloading the kids and going out together but that is what parents do.  We are a unit and we do everything together.

Here is some information for you to understand Autism and Care Considerations if you ever do decide that you want to leave your child with someone for whatever reason you may need some time away, medical reasons, work related or whatever.  I have found these useful and hope they will help you too.

The first thing you will need to do with any caregiver is give the information about Autism and help them to understand potential behaviors and what is expected and what they should expect as well.

Share with them any misinformation and ask questions.  Make sure they fully understand that having a child with Autism can be a special gift, after all God chose you out of millions of people to care for such a beautiful, sweet, precious and gifted child.  He chose you.  :-)

Does your child scream if he can't wear his favorite shoes? Does he enjoy fondling material of certain textures without regard for where or on whom that fabric may be located? Does he fear the toilet, the market, the dentist?

This was part of a post about "The Thinking Person's Guide to Autism" left by Shannon Des Roches Rosa, mom to an 11-year-old son with autism, as well as a high-profile advocate and educator for autism awareness.

If so, take note -- he's trying to tell you how he feels and what he needs from you: behavior as communication, she continues.

"Pay attention to cues -- what is your child trying to tell you?" says Lynette Fraga, PhD, VP of Early Care and Education and Special Populations at Care.com. "Parents and care providers have to be incredibly responsive and sensitive to children with autism regarding their behaviors," she says, imparting a necessary vigilance and hyper-awareness on the part of the parent.

Amanda Friedman, co-owner and director of Emerge & See Education Center, agrees, adding, "We need to become translators of our children's behaviors."

After speaking with several child development experts and parents of kids with autism, we highlighted the four most challenging autism behaviors and provide advice on how to best handle them.


Sleep Disruption
Sleep can be tough for kids with autism, as they tend to have highly sensitive nervous systems. Even the slightest variation in their day can affect their sleep for the night.

"We have to be extremely careful not to give Leo anything that has any caffeine," says Des Roches Rosa, who lives in Redwood City, Calif. "He can't have any chocolate after 3pm or he will be up all night. He's a very active, athletic boy, so we make sure he gets a lot of exercise during the day. If not, he also doesn't sleep."

Many parents find that creating a nocturnal oasis helps a lot. Eileen Riley-Hall, author of "Parenting Girls on the Autism Spectrum," says to think sensory-wise: room-darkening shades, a white noise machine, weighted blankets. "Basically anything you can do to make sleep more appealing," suggests the mother of two teenage girls on the spectrum.

But beware the common pitfall of unwittingly enabling their irregular sleeping habits, says Friedman. "A lot of parents feel that when their child wakes up in the middle of the night they have to get him something to eat, turn on the TV, and immediately cater to the fact that he stirred or woke up as opposed to bringing him or her back to bed. It's just a matter of teaching their bodies that it's still nighttime and we're not going to start the day just because you woke up."

One way to do this, Friedman suggests, is through visual supports like the TEACCH program method: "Show them a picture of a clock and a picture of Mom and Dad and say, 'You can come into our room when your clock matches this clock.'"

Autism Speaks offers free downloadable toolkits, one of which is all about sleep.


Food Sensitivity
"Kids with autism are historically tremendously picky and selective and limited in what they will eat," says Riley-Hall. "It's a sensory thing; you have to have lots of trial and error, certain textures, certain foods." When her girls were younger-they are now 13 and 11-she didn't make them eat anything they didn't want to eat: "For me it's more important for mealtime be pleasurable. Everybody eats more if they feel relaxed, so in the past I have made them something different to eat and then we all sat down together to eat."

Alison Berkley, co-owner and co-director of Emerge & See Education Center talks about a tactic learned from Susan Roberts, an autism educator and consultant with a specialty in picky eaters.

Getting your child to eat a variety of foods starts with expanding their tolerance level: "It doesn't even need to be that the child eats a new food but that they tolerate it being on the table," says Berkley. "At the next meal they tolerate it being on the plate and then they tolerate just touching it. Then you can slowly expand their repertoire of food."

She recommends a slow, gentle and positive approach "because you want them to take their fear and anxiety around food and transform it into a sense of empowerment and a sense of control."


Meltdowns
Meltdowns happen, that's a given. What matters is how prepared you are and how you can minimize their occurrence.

"Don't put your child in over his or her head," warns author Riley-Hall, who is also an English teacher at an inclusive high school in upstate New York. "I have parents I talk to who say, 'Well, everyone is going to Six Flags for the day," and I'm like, 'Well, you might not be able to do that.' If you know it's a situation where it's going to be really long or really difficult, you're just sort of setting them up. You have to accept that there are limitations that come with having a child with autism."

With a tantrum, the child is still in control, they want to get their own way, explains Riley-Hall. With a meltdown, they can't calm down and at that point either they've gotten themselves so upset or so overwhelmed they're no longer in control of the situation. "And they can be difficult to judge," she says. "It's really important not to always give in to meltdowns because you're afraid of them. The basic thing is to hold them and calm them and wait until they can calm down themselves. I know some kids have really egregious meltdowns, so it's important not to put them in a situation where you think they may have one but if they do, just keep them safe and soothe them in whatever way you know works until they can recover."

If a tantrum happens in public and unwanted eyes (and comments) are directed your way, you can curtail further scrutiny simply by handing out pre-made wallet-size cards that say things like, "My child has autism," with a website listed for them to learn more. You can get these through various autism organizations or make your own.


Aggressive Behavior
Aggressive and self-injurious behaviors are fairly common in children with autism, says Des Roches Rosa. When her son Leo acts aggressively, it's usually due to sensory overload or frustration with his inability to communicate his needs effectively. "Most times, when people better understand the basis for the aggressive or self-injurious behavior and then accommodate or support the person with autism, things can improve dramatically," she says.

Des Roches Rosa swears by data tracking: "We keep scrupulous notes about Leo and his behaviors and all the factors in his day." Having done this for years, De Roches Rosa incorporates notes his day: what he eats, how much he sleeps, even whether his father is on a business trip. "We can actually identify seasonal behavioral arcs. So when something is wrong, we can go back and figure it out."

Certain things can set Leo off, says Des Roches Rosa. "Like a change in barometric pressure, which can really affect his sinuses. When he's acting out there's usually a reason for it and in almost all cases we can find out what it is."

But when Leo went through an extremely violent phase, Des Roches Rosa called in a behaviorist. "A good behaviorist is purely there to analyze and understand and come up with positive solutions for behavioral issues," she explains.

So what does Des Roches Rosa do when Leo's in the throes of aggressive or self-injurious behavior? "We have to consider safety first," she says. "We move away, we say very loudly and clearly, 'Stop' or 'No' and make it very clear with a very different, very strict tone of voice that what he's doing is not okay."


Something to Remember

"If you know one child with autism, you know one child with autism," says Dr. Fraga, referring to a popular saying within the autism community. She adds, "There is so much diversity in terms of how autism plays out with each child. The idea that everyone is the same is mythical." This uniqueness can be embraced as well as prepared for.

Autism is in the news a lot these days. Recent estimates put the prevalence of autism at 1 in every 150 American children, and almost 1 in 94 boys, according to the Autism Society of America. But even with so much news about autism, it can be confusing to know where to turn for help and how to find the support services you need to care for a child with autism. Fortunately, there are a wide variety of organizations that can help you learn more about autism and how to be -- or find -- the best special needs child care for your child.

First, let's look at the basics.

What is Autism?
Autism is a neurological condition that affects brain function. You may hear the word "spectrum" a lot when people talk about autism, but what does it mean? Autism is also called Autism Spectrum Disorder (ASD), which is an umbrella term for five developmental disorders: Autistic Disorder, Asperger's Syndrome, Rett Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Every person on the spectrum is affected differently and to varying degrees. This means that everyone with autism has different challenges and unique care needs.

Before an autism diagnosis
Since her son was diagnosed with autism, celebrity Jenny McCarthy has helped to raise public awareness of the disorder through her books and through Generation Rescue, her autism advocacy organization.

It was McCarthy's persistence to find out exactly what was happening to her son that led them to an autism diagnosis. She has spoken publicly about the need for parents to follow their gut instincts when it comes to their children. If you suspect that something is amiss with your child, even if other people -- including medical professionals -- brush it off, it's your right and responsibility to seek answers and help until you get both.

While the exact causes of autism are not fully understood and there is no known cure, it is a treatable condition. Because of this, it's important to get help as early as possible. Early diagnosis and intervention can reduce the impact of developmental and social delays on kids with autism. If you suspect that your child may be on the spectrum, be diligent in getting a diagnosis, which can then open the door to help. (The organizations mentioned in this article may be able to connect you with healthcare providers in your area.)

How can you tell if your child should be tested for Autism Spectrum Disorder? The Autism Society of America advises parents to look for the following signs in their children.

Lack of or delay in spoken language
Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
Little or no eye contact
Lack of interest in peer relationships
Lack of spontaneous or make-believe play
Persistent fixation on parts of objects

As young children develop, they should hit certain milestones at certain times. For example, a child should be able to hold his head up when lying on his tummy by 3 months old, say "mama" and "dada" by 1 year old, and drink from a cup and use a spoon by 2 years old. The Easter Seals provides a list of expected developmental milestones in children. If your child misses a milestone, contact your doctor or healthcare provider immediately, as this can be an indication of autism or another problem.

After an Autism Diagnosis
If your child has been diagnosed with autism, seek treatment and support immediately. Again, early intervention is a key to limiting and reversing the negative effects of autism. Obviously, you'll need to work with your healthcare provider to arrange therapeutic interventions. Beyond that, the organization Autism Speaks provides a 100 Day Kit to assist families in getting the critical information during the first 100 days after an autism diagnosis. They also have an Autism Response Team with members who are trained to connect families with information, resources, and opportunities.

Caregiving Considerations
Parents of a child with autism often spend large amounts of time and energy caring for their child and working with him or her using specialized treatment methods. But like all parents, you need time to attend to life's other responsibilities and to take much-needed breaks. Therefore, it's essential to surround yourself with childcare options that work for you and your family.

Childcare comes in many forms. You may need a daycare program to care for your child while you're at work. Or you may be interested in camps that care for children after school or during the summer. Alternately, you might want to find an in-home caregiver or babysitter who can provide respite care for your child. When considering a childcare provider, review both their credentials and demeanor. You want someone who is qualified and respectful.

The Easter Seals has a handy list  to help you know what questions to ask when researching child care facilities. They recommend looking at the following criteria:

A - Accredited centers: Is the childcare center licensed? Does it operate according to the accreditation guidelines of the National Association for the Education of Young Children?

B - Belief in each child's abilities: Children should receive individualized learning plans that address their specific cognitive, social, emotional, and physical needs.

C - Committed teachers: Staff members should be warm and caring, and demonstrate respect for both children and parents. They should also be trained in CPR and first aid, and involved in continuing education programs.

A variety of intervention techniques are used to treat children with autism. When choosing someone to care for your child, you may want to look for a caregiver who is trained in the treatment that your child needs. At the very least, a caregiver should be willing to learn how to best care for your child and his or her specific needs. This means they should understand how to handle the following issues.

Communication: Kids with autism may not communicate verbally, or may have limited verbal skills. Caregivers should take the time to learn your child's unique communication style and methods, whether that be verbal or non-verbal cues such as gestures or other behaviors.
Physical safety: People with autism may be overly or insufficiently sensitive to pain. They may also have no concept of danger or fear. This means that caregivers must be vigilant in creating and maintaining a safe environment for a child with autism.
Self-care issues: Caregivers should be taught how much a child can and cannot do for himself. Some kids with autism need more help with self-care activities than others. It's important that your caregiver knows what is normal for your child, so she can provide consistency when you're not there.
Where to Find Help
On Care.com parents can search for qualified providers in their area or post a job with their specific needs. Care.com will run free background checks for members.
Autism Speaks
The Autism Society of America (ASA)provides Information & Referral (I&R) assistance to help identify local resources to meet your needs and share information so you can make informed choices. For assistance, call 1(800)3AUTISM or email info@autism-society.org.
ASA also runs Autism Source, a nationwide database of autism-related services and support.