Freelance writer Karen Scandariato resides in Cary, NC with her husband Mark and her three beautiful children, each of whom has special needs.

1.  Take Information in at Your Own Pace
My first reaction after my son Nicky was diagnosed was to jump in and read everything humanly possible on the subject of autism. I read a dozen books and visited personal web sites, taking in as much information as I could in a very short period of time only to feel completely depressed and overwhelmed. In retrospect, most of what I read those first few weeks was not helpful. Reading novels written by professionals about autism only frightened me and referred to characteristics that my child might never even display. What I did find useful early on were fact sheets on autism, the kind that you can attain from the National Information Center for Children and Youth with Disabilities (NICHCY) and the Autism Society of America (ASA). These fact sheets helped me understand that autism is a spectrum disorder and therefore my child might not now, or ever, display the exact same set of characteristics as another child with autism.

2.  Meet Your Child Where They Are
Sometimes children with autism can fixate on items or play with things in an unusual way. My son used to get stuck on one theme like Winnie the Pooh. He had to have Pooh-everything: Pooh videos, Pooh clothing, Pooh toys. I fought it for way too long until I discovered that Nicky was providing me a way into his world. Using Winnie the Pooh as a guide, I could get my son to taste honey, stay focused on a little Pooh puppet show I acted out with his stuffed toys, and listen as I read about all of the other Pooh characters. Each day I could branch out a little further introducing things through the characters: eating carrots and gardening with Rabbit, feeling sadness with Eeyore, making friends with Piglet, and bouncing around the room like Tigger. There were many good lessons to be learned from Pooh. By meeting Nicky where his interests were, I was able to teach him a variety of new skills. Take a look at what your child wants to do, meet him or her there, and then expand the possibilities.

3.  Advocate From Your Own Personal Strengths
I attended many meetings such as Writing Your Child’s Individual Education Plans or Writing to Government Officials to help get services for my child. These meetings gave me useful tips as well as the motivation to become more involved with school or public policies concerning autism. The truth is that not everyone is a writer. What I have learned is that it is far more effective to advocate from your own personal strengths. Everyone is good at something and there is no right way to advocate for your child. Follow your heart and help out in your most comfortable way. Are you a phone person? Are you artistic? Do you have good organizational skills? Find a way to maximize your personal talents.

4.  Build Your Own Support Network
Probably the single most effective thing I have done in terms of advocating for my child has been building a support network. I felt very alone when the children were first diagnosed. I made time to speak to other parents, at local meetings, online, and at school, who understood some of the issues my family and I were facing. Knowing that you have someone who really understands the challenges you face on a day-to-day basis can really hold you together in a time of need. As your child gets older it is imperative to extend that support network into the school system. Learning to work together as a team builds better opportunities and brighter outcomes.

5.  Learn How to Recognize Progress
I used to dread taking my children for medical evaluations. Time after time it seemed that there are certain behaviors that my child would exhibit at home for me and would not exhibit during an evaluation. I finally realized that an evaluation is just like taking a photograph. It’s a snapshot of one instance of time where my child may or may not engage in any tasks or activities and that, I decided, is okay. Think of your child’s early evaluations as a starting point. Then a year later, when your child is tested again, don’t focus on how many months delayed they are. Instead, measure their actual growth by looking at the child’s scores relative to where they were last year and calculate how many months passed and how many months of growth were shown. When I looked at my child’s evaluations in terms of their personal growth I often find that six months might have passed, and they had six months of growth!!! They might still be a year behind, but they were growing at a rate that was comparable to their typical peers. Another way to see progress is to keep a diary. When you read back through it, you will be amazed at the progress your child has made.

6.  Try One Intervention at a Time
There are many different, potentially effective methods of intervention out there for autism, along with some fairly obscure ones. I learned that the first thing you do is follow your heart. Remember, no one knows your child better than you. When presented with a model of intervention, consider if it makes sense to you. If you decided to embrace it, then do so wholeheartedly. It is difficult to clearly measure progress if you overlap methods. Decide on a path and follow it with the understanding that you will re-evaluate it at some designated time and decide whether to continue or try something else. I am not suggesting that you cannot concurrently run two therapies, medications or models, just that you start one at a time so you can accurately judge the effectiveness of the method and whether it meets your child’s needs.

7.  Put Away the Microscope and Encourage Others to do the Same
I am always amazed at Individual Education Plan goals that read "Lara will achieve this goal at 100%." I have often thought about what it is that I do consistently at a level of 100%. I fear there isn’t much. Remember that no one has to perform 100% of the time. Your child probably has splintered skills just like everyone else in the world. Resolve not to look at your child with a microscope and encourage others to do the same. The standard should be no higher for your child with a disability than it is for his or her typical peers. It’s okay if they "only" get it right most of the time. No one is perfect.

8.  Ask for Help When You Need It
Some people refuse to ask for help because it makes them feel as if they are not capable of helping themselves. Children with disabilities can have great impact on a family. You may be compensating for your child without even knowing it, which can take time away from your spouse, your other children, and most importantly, yourself. No one is capable of handling it all. This country is rich in resources that are already in place for people who access them. Each state has a Parent Training Organization (PTO) whose job it is to help inform and educate individuals with disabilities and their families. There is no penalty for asking for help. Remember that you will be with your child for years to come and need to have endurance. Resolve yourself to access funding for your child’s needs, area programs for inclusion, therapies, resources, and respite.

9.  Educate Those Around You
People often fear what they do not understand. I find that "knowing" is never as frightening as "not knowing." The more I educate my neighbors, shop owners, program directors, principals, teachers, friends, and relatives, the less I find people fear autism and my children. I help close the gap by welcoming friends and family into my home and helping them to understand my children. Take time to explain to others why your son or daughter does things differently. Remember that each of us is a very unique person; beautiful in our own way, and that our children are no exception.

10.  Take Days Off
Perhaps one of the most difficult things I have learned is to take days off, away from autism. Take time for you, to get out of the house and just do something relaxing. Swim, walk, have your nails done, shop with the girls, golf with the guys, see a movie, whatever it is that will give you a mental break. Your endurance is critical to your child’s success, so take good care of you. Plan regular times to get out with your spouse, and your other children too. Keep in mind that you have plenty of time. If your child is autistic today, they will still be tomorrow. You needn’t do it all today!

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