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.
