As a parent raising a child, adaptation to all situations is mandatory. There will be messes. There will be the family trip to the beach that’s cut short. There will be the birthday party that won’t be the “best day ever!” At the end of all that, there is the relationship of you to your child.
Raising a child with special needs will require much more of you. This is the time where you will find that you need to discover untapped reserves of patience, flexibility, and adaptation. Your child may have a diagnosis of Down’s Syndrome or cerebral palsy, or declared to be on the Autism spectrum: going forward is the only direction you have!
Your child will need you to be your best possible self: Make sure you take some time for a breather, especially after the baby is born. As the days go by, take some time to re-group: shower, change your clothes, get a bite to eat!
Speaking of eating, mind what you eat and make sure you’re getting enough rest. Junk food and alcohol won’t help you cope with the coming days as they will erode at your health.
Observe yourself for a day: take stock of how you feel and how you look, especially when emotions run high. Your child and your family are noting your body language, even on a subconscious level. It’s going to be helpful in the days to come to know who you are and how you feel.
Don’t blame yourself when things go wrong!
When you’re dog tired, don’t be afraid to ask for help! As you will see, it’s important that you have a powerful, stable, supporting environment of family and friends.
Work to Be a Family
You alone will be the person who will best understand your child’s circumstances and needs. Learn to read your child’s moods and feelings. Even if your child has a profound intellectual disability, how you read your child’s behavior will be key in managing the day to day. The primary way your child will best be able to interact with a wider world resides in how much regularity you provide.
If you have typical children in the family, find strategies to help them be a part of their atypical sibling’s life. Have them assume a role in care by demonstrating then taking time to help them dress a sister or brother, ultimately making their role a regular feature of their interaction as needed. Even mealtimes could be an occasion for modeling the right way to for a brother to help feed his sister, spooning food to and tidying up.
Your special needs child deserves to have a childhood, so make time for fun activities! Even if you need to make sure a public pool is wheelchair accessible, why not go for a swim? Research family-friendly events that accommodate special needs children. Make the entire family a part of these excursions. Enough positive experiences will make the difference in creating warm memories and strengthening bonds.
Always be sure to celebrate your child’s milestones. As much as you can encourage your typical children successes, offer the same treatment to your atypical, special needs child. Keep a record of those successes as a reminder to you as well.
Community succeeds because of communication! No matter what you feel through the hardships of the early days, remember: “You are not alone!” Do your best to gather as much family and friends who are willing and able to help.
Look for people who are also raising a child with special needs, especially if they too are raising a child with a similar condition. They can also steer you towards doctors and resources you may not have been aware of. You can find many communities in your area via online searches or public bulletin boards.
And if you ever need experienced sitters, you’ll know where to find them.
Be Prepared! Research Healthcare Options
It may be frustrating and it may take a while, but it’s in your best interest to seek out the best possible doctors and healthcare providers. You will have your experiences with doctors who claim to know what’s in the best interest of your child, but you may realize they don’t understand your child like you do. That’s why it’s important to maintain a detailed set of records.
Investigate resources for special equipment, such as modified wheelchairs, tubs and safety railing for the home.
Be sure to maintain detailed medical records, lists of doctors and therapists, allergies, and dietary issues.
Keep a journal to record any behavioral information such as fluctuations in mood, or responses to environment.
Be Your Child’s Advocate
Only you will know your child! You will hear the observations from family, friends, teachers and healthcare professionals, but knowledge of your child falls upon you! You must do the work to be as present as possible for your child.
Keep track of your child’s health information, allergies and any other health issues.
Keep track of your child’s behavior.
Keep track of developmental milestones and celebrate them with your child.
With the arrival of any new child, it’s time to get real about coming together as a family. For the family of a special needs child, the real reality occurs with an initial diagnosis or after a behavioral evaluation. As a parent, remind yourself that LOVE—pure and unconditional—is the foundation of the family. Love will guide the course your family takes on this adventure!
The great news is there are plenty of resources and books available to the parents of special needs children. Here’s some books and links I used to create this piece that I hope may be of use to you:
The Special Needs Parent Handbook: Critical Strategies and Practical Advice to Help You Survive and Thrive by Jonathan Singer
Not What I Expected: Help and Hope for Parents of Atypical Children, by Rita Eichenstein, Ph.D.
Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child With a Disability, by Robert A. Naseef, Ph.D.
The Arc: For People with Intellectual and Developmental Disabilities