After 12 months of age, I knew William’s language was not progressing or functioning like his same aged peers. He could learn new words, but it was at a very slow rate. Other concerns on my list began to grow: lack of eye contact, hand flapping, and weak recognition of his surroundings.
By the time William was 17 months old, I didn’t want to wait any longer, so I called Early Childhood Intervention (ECI) in Texas. This local program provides children up to three years of age with a plethora of services, including speech therapy, occupational therapy, and physical therapy. We began receiving services right away. At the age of two years, I took William to the Child Study Center in Fort Worth to be evaluated with a developmental pediatrician. After assessing and collaborating, William was officially diagnosed with autism.
I Have a Concern: What to Do Next?
If you feel concern or have questions about your child’s development, consider these tips.
Second guessing. If you feel you need more answers to questions relating to your child’s development, then you need to make the call and take that initial step yourself. Don’t second guess yourself; if you have concerns, it’s better to address them and be wrong than to ignore them and find out later your concerns were legitimate.
Label fearing. If you’re feeling particularly disheartened by a diagnosis or the seemingly limitless mountain you have to climb, keep in mind that a diagnosis is not a death sentence. Children may exhibit more “typical” and less “autistic” behavior as they get older. If the diagnosis means getting the help you need for your child sooner, then I am all for it. Keep in mind, if insurance coverage is an aim for you in trying to get therapy services covered, you will need a diagnosis. It will be impossible to get coverage without a formal diagnosis.
Effects of the Diagnosis
Grieving. After receiving the diagnosis, everything was a blur. I knew I had to be seriously proactive. I grieved, am grieving, and will grieve. It is cyclical. To be the best advocate for your child, you need to keep going. You can do both, and you cannot do it on your own. You need the support of family, friends, and qualified professionals. You need to open yourself up, even while grieving, so that you can learn more about how to help your child. There were days, many days, when I didn’t want to get out of bed. You must grieve, and it is a natural process that will change over time.
Support. I cannot express to you how much you need and will continue to need support. You need help so that you have enough energy to be your child’s advocate. Find a support group or create your own! These people will be your outlet to regain sanity.
Sleep. Get your sleep any way you can. Take shifts with your spouse or other support person. Work out some type of schedule, especially when times are tough.
Reality check. Some days will be harder than others. The days that are “good” will give you patience and energy for the difficult ones. You will get breaks! There will be good days, so if you’re in a “bad” day, just keep in mind that tomorrow might be totally different.
Recharge. As important as it is to have energy to work with these precious children, you also need time away to recharge. Part of your journey in learning how to help your child is learning how to help yourself–how to balance the never-ending quest for your child’s wellness and development with your own self-care.
Make the time. Besides making some quiet time for yourself once in a while, make time for your spouse. You need to keep your date nights. At least half of the time, you won’t feel up to it, but keep your date with your spouse anyway. It’s important for both of you.
Setting Up Your Child for Success
Learn about autism. The more you know about autism spectrum disorders, the better equipped you’ll be to make informed decisions for your child. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.
Become an expert about your child. Figure out what triggers your kid’s “bad” or disruptive behaviors and what elicits a positive response. What does your child find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you’ll be better at troubleshooting problems and preventing situations that cause difficulties.
Accept your child, quirks and all. Rather than focusing on how your child is different from other children and what he or she is “missing,” practice acceptance. Enjoy your kid’s special quirks, celebrate small successes, and stop comparing your child to others. Feeling unconditionally loved and accepted will help your child more than anything else.
Don’t give up. It’s impossible to predict the course of an autism spectrum disorder. Don’t jump to conclusions about what life is going to be like for your child. Like everyone else, people with autism have an entire lifetime to grow and develop their abilities.
Be consistent. Children with autism have a hard time adapting what they’ve learned in one setting (such as the therapist’s office or school) to others, including the home. For example, your child may use sign language at school to communicate, but never think to do so at home. Creating consistency in your child’s environment is the best way to reinforce learning. Find out what your child’s therapists are doing and continue their techniques at home. Explore the possibility of having therapy in more than one place in order to encourage your child to transfer what he or she has learned from one environment to another. It’s also important to be consistent in the way you interact with your child and deal with challenging behaviors.
Stick to a schedule. Children with autism tend to do best when they have a highly-structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your child with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your child for it in advance.
Reward good behavior. Positive reinforcement can go a long way with children with autism, so make an effort to “catch them doing something good.” Praise them when they act appropriately or learn a new skill, being very specific about what behavior they’re being praised for. Also look for other ways to reward them for good behavior.
Set realistic goals. It helps to break down tasks into separate steps that you prompt and respond to independently. This encourages success and reduces frustration.
Use things your child enjoys as reinforcement. Keep in mind many children with autism may take pleasure from things others would not find reinforcing. That’s okay. What is important is that your child sees the reward as reinforcement for work that has been done.
Plan ahead for transitions. Children with autism tend to have difficulty with changes or new activities. You can help by allowing for adequate time and using prompts before the transition takes place. This can include verbal cues, visual schedule, or physical cues.
Do you have a child with autism? Will you share a bit of your story with us in the comments?
Melanie Fowler, author of Look At My Eyes, holds B.A and M.A. degrees in Speech Language Pathology and Special Education. Her son, William, was diagnosed with autism at the age of two. She and her husband, Seth, continue to help others through speaking engagements and outreach initiatives. To read blogs from Melanie, check out her website and while you’re there, buy a copy of her book, Look At My Eyes. Or find the Fowlers on YouTube. Contact TheFowler4 Group.