Your child was diagnosed with a developmental disorder, now what?

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Resources

The National Dissemination Center for Children with Disabilities serves as a central source of information on disabilities in children. The center’s website includes:

information on disability and education laws

resource sheets that connect parents with the disability agencies and organizations in their state

fact sheets on specific disabilities including attention deficit hyperactivity disorder, autism spectrum disorders, developmental delays and intellectual disabilities

a guide for parents and caregivers who are new to the world of disability

Visit nichcy.org.

Attention deficit disorder. Autism. Asperger Syndrome. Pervasive developmental disorder not otherwise specified — otherwise known as PDD-NOS.

Receiving such a diagnosis can be overwhelming. Parents of newly diagnosed kids with special needs have their own special needs, starting with learning how to navigate all the treatments and services available.

We asked experts around Chicago — doctors, therapists, nonprofit leaders and parents — what advice they would offer parents dealing with the diagnosis of a developmental disorder. Consider their advice a road map and GPS.

1. Breathe.

“Parents have all these hopes and dreams, and when they get a big diagnosis like that, I recommend the parents take a step back and breathe for a moment. Have your primary care physician coordinate care –with the other doctors, therapists and specialists. Parenting is really a team effort. The best person to talk to about (medication) is the physician prescribing the medicine. The physician prescribing the medicine knows your child best, and you can make a decision together about what’s best for the child. There’s always a risk with medications, and there’s a risk in not taking them.”

— Dr. Lauren Boyd, developmental and behavioral pediatrician at Loyola University Medical Centers in Oakbrook Terrace and Maywood, and clinical assistant professor of pediatrics at Loyola University Stritch School of Medicine

2. Intervene early.

“Do as much therapy as you can when your child is young. When the academics and homework kick in, there will be less time, and your child needs down time. Make sure they have someone to talk to, especially in the tween and puberty years.

“Build their self-esteem by focusing on the things they like and are strong at. Don’t obsess on the weaknesses. Point out famous people in history that have had their struggles, and last but not least, change your language from ‘learning disabled’ to ‘learning differences.’ After all, everyone learns differently, and everyone has struggles.

“You will probably have an IEP (individualized education program) or 504 (referring to rights under Section 504 of the Rehabilitation Act) for your child. When you attend the meetings, don’t be adversarial. You are all on the same team. So much more will be accomplished. I am beyond proud of my son. He knows who he is, how he thinks, and has an awareness of self that most ‘neurotypicals’ don’t have. I am so honored to have him in my life.”

— Gigi Ramis, Deerfield resident who has a 19-year-old son with Asperger’s (he’s entering his second year of college in the fall)

3. Organize your paperwork.

“You may already find you’ve accumulated a lot of paperwork about your child and about autism in general. Organizing the information and records that you collect for your child is an important part of managing his or her care and progress.

“If you set up a simple system, things will be much easier over time. You may need to stop by an office supply store to pick up a binder, dividers, some spiral notebooks, loose leaf paper or legal pads and pens. Many parents find that binders are a great tool for keeping the mountains of paperwork down to a more manageable, mole hill size and for sharing information.”

— The Autism Speaks 100 Day Kit, (www.autismspeaks.org/family-services/tool-kits/100-day-kit), a workbook designed for families to make the most of the first 100 days after a child’s diagnosis

4. Get involved.

“Call your school or social service agency that helps with case management. Schools have great community resources and can link families with the right agencies/groups to assist with newfound challenges. Talk with other parents. Other parents have gone through the process and know how to best ‘navigate’ the system. They can also link new families with effective resources.

“Everyone’s situation is different. Some children need medication and others don’t. Some diagnoses are more severe where others are more manageable. The more resources and people you talk to the better armed you will be to manage possible land mines.”

— Jennifer Borrowman, superintendent of recreation for the Fox Valley Special Recreation Association, Aurora

5. Avoid ‘diagnosis shopping.’

“Parents are very concerned — ‘is this the right diagnosis?’ Then they go and get second, third, fourth, fifth opinions. Try not to be too focused on the diagnosis. Parents always tell me they’re most relieved once they get a treatment plan in place, and as time goes on, we can tweak the diagnosis … especially if a child is very young.
“What I do not recommend parents do is diagnosis shopping instead of getting treatment going. Whether it’s Down Syndrome, autism, mental retardation or something else, get a program that will help them interact more successfully with their child. We are very concerned with training parents to help their child grow and develop.”

— Carol Rolland, Ph.D., director of developmental pediatric services, Advocate Illinois Masonic Medical Center, Chicago