What We Can Do After We Learn the Diagnosis

I believe there is no greater reward than when a family finds the right provider, practitioner, program, method, strategy, piece of equipment, assessment tool or other activity that helps their son or daughter come closer to reaching his or her full potential.

I have lost count of how many times I have heard,” My son or my daughter was just diagnosed with autism, ADHD, Downs Syndrome, a rare genetic disorder, seizures or intellectually impaired, now what do I do? “

I Advise:

1) Become the expert of the diagnosis. Carve out time to read, connect with other parents whose son or daughter has similar challenges and ask every question you can think of. No question is silly or stupid.

2) There are associations and parent networks who have come together to support and educate you in the specific diagnosis you may have just received. Autism Society of America Home - Autism Society (autism-society.org),  ADDA Home | ADDA - Attention Deficit Disorder Association  National Down Syndrome Association Human Rights Organization for Individuals with Down syndrome | NDSS  Seizure Disorders/Epilepsy Foundation Epilepsy Foundation #1 trusted site for epilepsy and seizure news, United Cerebral Palsy Association Home - United Cerebral Palsy (ucp.org), The Association for People with Intellectual and Developmental Disabilities The Arc | For People With Intellectual and Developmental Disabilities .

3) These larger organizations are going to be able to identify effective therapies, intervention strategies and educational curriculum that have worked. Autism Speaks Tools Kits Tool Kit | Autism Speaks is just one example.

4) In most large cities there are also parent networks. In Northern California for example there is Matrix Parent Network https://www.matrixparents.org, Parents Helping Parents, Parents Helping Parents San Jose Special Needs Children : Parents Helping Parents (php.com) Support For Families Support for Families of Children with Disabilities. First connect with the larger organizations (in number 2) and ask them for the local parent groups closest to your area.

5) Next put together an early intervention team. The earlier you work with experts in your son or daughter’s areas of need, the sooner you will understand how to help them reach their full potential. Communication and eating challenges need to be addressed by a knowledgeable speech and language specialists. Their motor (gross motor, fine motor and motor planning) needs to be addressed by an occupational therapist, unless foundational motor needs are identified and then please connect with a physical therapist to understand how to support foundation motor needs. Sensory challenges are usually addressed by 

the Occupational Therapist. 

6) Your early intervention team may need to address seizures. If so, you need to find a knowledgeable neurologist who understands not only seizures but your profile of child

 (ADHD, Autism, Cerebral Palsy etc.) 

7) Your early intervention team may need to address visual processing and acuity challenges and so the correct medical practitioner and vision specialist needs to be added to your team and excellent assessments completed, with strengths and challenges identified and supports recommended. 

8) Make sure an audiologist has evaluated hearing sensitivity and loss.

9) If your son or daughter is having challenges sleeping, then please find a sleep clinic or psychologist or neurologist who specializes in sleep challenges of those with neurological problems.  Excellent sleep lays the foundation for the best learning and when the child sleeps and the family receives the needed rest they require, the best problem solving occurs.

10) Some children may gain support from a Behavior Specialist evaluating a specific behavior challenge that is not being addressed by a specific therapy. Make sure the Behavior Company you choose has certified therapists with at least 3 to 5 years’ experience helping those with the diagnosis your child has. 

11) There will be those children who may need assistive technology supports. There are specialists who complete these assessments. There are tools to help build communication skills and support educational learning. Make sure the one you choose, understands your son or daughter’s specific challenges and strengths.

12) Creating a support team of family and friends is another vital step. Take the time to explain to siblings, grandparents and aunts and uncles about the challenges of your son or daughter. Reduce their fears with knowledge. Perhaps open up to help. Perhaps a grandparent might cook some meals for you, find a housekeeper to reduce stress, come over and provide some supervision while you take a nap or get out for a walk or some type of exercise. Your friends are going to be worried about you. They may find it hard to speak with you. Make the first step forward. Tell them all about your child. Tell them you need their support more than ever. Make friend time to help you have the break you need in order to be ready to help your son or daughter. 

13) Learn all about your son or daughter’s educational rights. The federal law mandates that all students receive a free and appropriate effective education. Learn about the IEP (Individual Educational Plan) and all your rights in helping to create that key document which outlines ALL educational services. 

14)  I have advised families to fire themselves as nannies and butlers and hire themselves back as coaches. If you want your son or daughter to maximize his or her potential do not think for them, problem solve for them and not expect them to participate in their lives. They need to start young to learn how to do everything, as it will take them longer. They can help early to put their toys back, get a spoon for their cereal, ask for milk to be put on the cereal, get their own coat before going outside, clear their dishes, pick out their clothes, take their hamper to the laundry room, ask for a snack and how many chips they wish. 

Everyone on your teams must be working together to nurture independence. Your educational and therapeutic teams need to be a group of professionals who continue to be open to learning and the new technology, curriculums and therapies that arise. You, as the parent need to act as the orchestra leader, making sure everyone is on the same page of the music. Appropriate goals and objectives need to be designed, on-going assessment to be sure the correct strategies and interventions are being used need to be created, on-going progress needs to be reported to you and when progress isn’t being made you need to ask, “Why Not” and what is going to be done to address the lack of movement forward.

“Life is an Adventure now, if nothing else” ……. Helen Keller