10 Tips from a Mom of a Child with ASD
Autism touches all of us. . . through our children, grandchildren or the children of our friends. It is time to take action to combat this scourge that is stealing the minds of our children. If you or someone you know has a child with autism, here are some tips from a family that has been traveling the path for the last five years.
1. Get a diagnosis.
Don’t hide your head in the sand and think that it couldn’t happen to you. If it is there, then the best thing to do for your child is to start intervention. An intervention can be a diet change, a medicine (we use Abilify), Floortime, TEACCH, or ABA (all forms of behavioral therapies). If your doctor hedges on giving you a referral to a developmental pediatrician (sort of a coach for the whole team), then change doctors. Don’t wait.
The American Pediatrics Association has now stated that all children should be tested at least twice before the age of 2. Be prepared, however, to wait a long time (six to eight months) for access to a developmental pediatrician.
2. Learn what testing looks like.
There will be tests for language, gross motor skills, fine motor skills. Ask for clarification. . . if you like statistics, be sure to ask for the z-scores relative to the mean for children at that age. . . .minus 1, 2, or 3 standard deviations below the mean indicate a developmental delay. You can also get the scores in age equivalent scores. . . .for example, when Jack was 3 years old, his expressive language (what he can say) was about 18 months old, his receptive language (what he understood) was a bit older.
A good evaluator will not tell you one way or the other (leave that interpretation to the development peds people), but he/she should be able to tell you what they are testing (fine motor skills, gross motor skills, et cetera). Keep a record of every medical test, every psychological evaluation, every meeting. This will help you “cut to the chase” when you meet a new provider.
3. Subscribe to www.Autismspeaks.org.
They provide great information and a place to begin. When Jack was first diagnosed, I spent hours, days, weeks and, seemingly, months searching for information that would provide insight into programming (oh, and learn the language that the experts speak. . .it makes it much easier. . .I built a glossary as I learned the vernacular of the world of autism) and how to develop something for Jack. www.Autismspeaks.org has a 100 day kit for families which have just received a diagnosis. While you feel like your world is falling apart, this kit allows you to refocus and start the long journey of raising your very special child.
4. Develop objectives that will give you a set of goals.
We went with a three-pronged strategy. Our goal was kindergarten by age six (we will meet this milestone), potty-training (with the huge help of his preschool aide and teachers in NY) and a renewal of language skills. We expected to achieve this through the efforts of the medical profession, the educational system, and our own home environment. It took fighting with the medical professionals over the course of three years before we felt like we gained any ground (their opinion was that it wasn’t their problem).
The schools have been comparatively easy, but as we approach attending a public school, we expect that the road will be rockier. As for our home, we have, with difficulty, become what I refer to as an ABA home. We have changed the way in which we communicate with each other, with our children and with the outside world.
5. Learn your rights as a parent.
We, as citizens of the United States, are guaranteed a federally-mandated free and appropriate education. Unfortunately, what looks like “appropriate” to your basic public educational system may not be appropriate for your child. Understand what advocacy looks like, how you can ask for advocates to work with you, how laws and interpretations differ from state to state (we have now learned how to deal with autism in three different states over the course of four years). A great website that offers great information is www.wrightslaw.com.
6. Work at understanding how to match challenges with appropriate services.
It is not enough for an IEP to be developed, it must also be appropriately implemented and maintained. It must be updated and renewed. If you don’t feel like your child is receiving the appropriate implementation, ask for a meeting. You not only have to learn what issues your child is facing, but you have to understand what types of services will help you to meet them and then what types of providers are appropriate to deliver the services.
At Hopkins, we have a team of about 7 professionals: a psychiatrist, an occupational therapist, a developmental pediatrician, a pediatric gastroenterologist, a developmental psychologist, a speech and language pathologist, a social worker, an internist. At school, we have a behavioral coordinator, a program coordinator, three behavioral technicians, a speech and language pathologist, an occupational therapist, a music therapist, a classroom teacher, and a classroom supervisor. At home, we have trained respite care givers, a behavioral therapist (a BCBA-credentialed professional) and a behavioral technician from Vista (the school Jack attends is The Vista School in Hershey, PA). We use three different curricula: The Complete Learning Model by Victoria Tucci, ABLLS (out of California) and PECS, as well as an assistant technology speech device.
7. Don’t hide in your house.
Your child needs socialization and you can provide that through interacting with the world. Know your child’s strengths and weaknesses and work diligently to provide the best environment for him or her. Get a tougher skin when people give you the hairy eyeball. You would be surprised how much people will respond favorably when you just let them know what is going on in the situation.
My favorite reply is to just smile and say “Autism. . .the gift that just keeps on giving”. If they can’t be compassionate to your situation, then you really didn’t have much to say to them in the first place. At least once a week, our behavioral technician goes with us on a community outing (Jack also has this as part of his program at Vista). We have used this method to go grocery shopping, shopping at stores and malls, events (we just went to the Cherry Blossom Festival in Washington DC), and to attend Mass.
8. Don’t let autism rule your lives.
Remember your relationships with your friends, your spouse, your other children and your extended family members. As I have been reminded over and over again, no one wants to be married to a martyr. It is just too much work.
9. Remember to find time to take care of you.
It is not wrong to read a book about something other than autism or to spend the day watching reruns of Law and Order. As we have all heard over and over again, you can’t take care of anyone else until you take care of yourself.
10. Try to find joy in the journey.
There are days when we all wish we were as happy as Jack. We lapse into Jack speak. . . . we watch Ellie try to provide ABA therapy by taking away his toys and then making him “ask” for them back. And, most of the time, we just take it day to day.
Feel free to share this with people you might know who might be hesitant to get a diagnosis or whose pediatrician tells them that “he will grow out of it”. Early intervention is the key to success in dealing with autism.
Note: Many thanks to Leslie for these tips. Her family is currently living at Ft. Bragg, NC while her husband, an airborne infantry commander, is deployed in Afghanistan.