Five Things to Do After A Special Needs Diagnosis

I’ll never forget the moment I was told my baby had Down syndrome. I was sitting next to her incubator in the hospital, holding on to her heel. I remember being pleased because her eyes were open. She stared intently into mine. The doctor spoke and the words “Down syndrome” crashed over me. Suddenly I was alone without a buoy, paddling like crazy in a choppy, new ocean. When a parent first hears, “your child has a disability,” it can be shocking, saddening and scary. If you find yourself in this situation, here are a few things you can do that might help.

1. Draw your child close

Remember she is the same person she was before the diagnosis. “I wish I would have told her that I loved her before all those horrible thoughts rushed into my head,” my friend Kim told me after the birth of her daughter with a disability. I understand. After I heard Down syndrome, I looked at my daughter Polly differently out of fear and ignorance. I wish I would have remembered that she was a baby first – before her diagnosis. More importantly, she was my baby. It took months for this to click for me. Sometimes I still grieve that time lost.

2. Don’t Google the diagnosis right away

In our modern times, a click on to the internet is as natural as brushing our teeth. But with a new diagnosis, hold off. It is difficult to focus on your child if your attention is held hostage by a vast amount of information. If you want basic information about the disability, talk with a trusted source like your doctor or check an up-to-date medical site online. Just don’t go on an internet rampage right away.

3. Care for your baby/child

After having a baby with special needs, an experienced mother offered me sage advice: “Continue to care for her daily.” She meant that I should not shrug off parenting duties to my husband, mom or friend out of grief. “You take care of that baby,” she said. Her theory was that if I stayed away from my child, the grief and shock of the diagnosis would be prolonged. At the time, I was a bit offended, but I now see the wisdom. Changing my baby, feeding her, bathing her and putting her to bed helped me see that she was my child –– diagnosis or not.

4. Try not to worry

A  new diagnosis brings worry; about your child’s health, the future, money, other children, your marriage and other people’s reactions. Worry is a dangerous landscape for parents anyway. If left to its own devices, it sucks up our energy and time; two things that are usually in short supply in parenthood.

5. Know there is support

In the many years that I have parented kids with special needs, one of the biggest gains from the experience is community. Some hospitals, organizations and schools host support groups for families affected by special needs. Talking to other families calms fears, provides great resources and assures us that life is just as good – albeit a little different, with the presence of special needs.

LOCAL EVENTS AND RESOURCES:

April is National Autism month:

  • Chico Walks for Autism in Bidwell Park, April 1 at 8:30 a.m.
  • Redding’s Airports for Autism at Benton Airpark, April 1 at 8:00 a.m.
  • Family Special Needs Potluck and Support in Spanish, Butte County, April 4 & 11.
  • Family Autism Support & Potluck, Butte County, April 18th.
  • Living with a Child with Autism, Butte County, April 20 & 25.

Far Northern Regional Center serving individuals with developmental disabilities, and their families. Referrals to services and support for infants to adults in all Upper California counties. (530) 222-4791 http://www.farnorthernrc.org

The Lifespan Center is home to the Autism Lifespan Office and Lifespan Center Store. It also houses Little Red Hen’s children’s programs such as Lil’ Sprouts, Buddin’ Sprouts, and Growing Together Teens. Services for individuals and families
affected by Autism. (530) 897-0300
http://www.autismlifespan.org

Remi Vista Inc. offers Applied Behavior Analysis (ABA) in Chico, Redding, Mount Shasta and Yreka. ABA is a proven method of helping individuals, including those with autism, learn important life skills such as communication, social interaction and self-care. (530) 224-7160
http://www.remivistainc.net/applied-
behavior-analysis

Rowell Family Empowerment of Northern CA is a parent-founded, parent-operated, non-profit organization that offers free services to families of children ages 3-22 with special needs. Programs are supported through grants, contracts, donations and fundraising activities. (530) 226-5129
http://www.empoweryourfamily.org

SLATE – Successful Living with Autism through Training and Education. The hallmark of SLATE is Get SET (Get Social Emotional Training), SLATE’s summer program which provides an environment for children and young adults to learn and grow side-by-side with typical children. (530) 226-5129
http://www.empoweryourfamily.org/slate

Special Olympics Northern California offers free sports training for anyone diagnosed with intellectual disabilities age 5 or older. Competitions for ages 8 & up. Call for county  information.
(925) 944-8801 http://www.sonc.org

Recommended websites:

How is ADHD Diagnosed, ADHD & YOU:
http://www.adhdandyou.com/adhd-patient/symptoms-of-adhd/adhd-diagnosis.aspx

Learn the Signs of Autism:
http://www.autismspeaks.org/what-autism/learn-signs
http://www.autism-society.org
http://www.autismsupportnetwork.com

Prenatal, National Association for Down Syndrome:
http://www.nads.org/prenatal 

You Are Not Alone, Center for Parent Information and Resources:
http://www.parentcenterhub.org/repository/notalone

Receiving a diagnosis for your child with special needs, KidsHealth:
http://www.kidshealth.org.nz/receiving-diagnosis-your-child-special-needs   

Learn more with these recommended books:

  • The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing by Karen Siff Exkorn
  • The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz and Lucy Jane Miller
  • Special-Needs Kids Eat Right by Judy Converse
  • Everybody Is Different: A Book for Young People Who Have Brothers or Sisters With Autism by Fiona Bleach
Gillian Marchenko
About Gillian Marchenko

Gillian Marchenko is the author of two books: Sun Shine Down, a memoir about her daughter with Down syndrome and Still Life, A Memoir of Living Fully with Depression. Connect with her at www.gillianmarchenko.com

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