Your child’s been struggling and you’ve seen the signs, hoping that maybe your fears are wrong. You’re doing everything you can to help him and searching out resources. Maybe you are just recognizing the concerning signs or maybe you have just received an official diagnosis or maybe you’re in the middle of a long search, trying to find answers about why your child is struggling. Your emotions are intense and raw and tears are always close to the surface. The reality of your demands in caring for your child and the emotions that come along with that are overwhelming. Where do you start?
After over 15 years of working with children and adults with a wide variety of disabilities as an occupational therapist and with input from some wise and amazing parents of children with different special needs, I’d like to share 6 dos and don’ts to keep in mind while on your journey of parenting a child with special needs. The child you love is counting on you. You can do this!
1. Do educate yourself from reliable sources.
Don’t believe that anyone has a crystal ball to predict what your child will do or become.
“Education [has] led to less frustration for me. I learned my daughter was having a hard time, not giving me a hard time. Talking to other parents helped me feel less alone and that I wasn’t crazy,” said one mother of a daughter with Sensory Processing Disorder. She also recommends finding support groups in physical locations or online.
Another mom of a son with Autism says, “Understanding why [he] has certain difficult behaviors has made all the difference in the world as I try to cope with them. [He] does a kabillion things that drive me BONKERS…, but when I started learning about the reasons why [he] might be acting in these ways and the science behind it, suddenly it was more fascinating to me than it was annoying.”
Education helps you understand how to help and support and accommodate for your child. You will learn what can be expected and what can’t in different areas. You learn how to interact, how to create the best environments, what services, therapies, treatments, products and equipment may help. Parents who are always seeking out education will find the newest research and innovations on their child’s condition.
Seek out reliable sources and recognize not all resources are trustworthy. Ask doctors, therapists, teachers, and other special needs parents who are familiar with your child’s concerns about good resources. Internet searches will help you find many, but be ready to sift through them to find good and dependable sources and be emotionally prepared to deal with the worst-case scenarios you will find. One mom was given a diagnosis while her micropremie baby (born weighing less than 1 pound, 12 ounces or before 26 weeks gestation) was in the NICU (neonatal intensive care unit). “The doctor had given me lots of information, which I only remembered part of what he was saying [because my] emotions started kicking in. So I googled it… BAD idea… which made my anxiety even worse. Google is great, but it’s always [the] worst-case scenarios.”
Parents always want to know what to expect in the future. Doctors, professionals, experts and other resources want to give realistic expectations. But, no one has a crystal ball for what to expect for your child. Use your child’s prognosis as a guide, not a determination of a final outcome. Sometimes a child has better outcomes than expected and sometimes there are more complications than expected. Take it day by day and do your best with what you’ve learned.
2. Do create, maintain, strengthen and use your support system of family and friends.
Don’t feel guilty for taking time to care for yourself and other members of your family.
A mother, whose child has received multiple diagnoses over several years, has had to repeatedly rely on her personal support system. After his most recent Autism diagnosis, she said, “I had every emotion you could think [of]. That’s when I really had to rely on family and of course, [my partner] the most! Having that support so you’re not in it alone makes a world of difference!!!”
Parents of children with special needs must learn to accept and ask for help from family and friends. Keep your personal relationships strong. Take care of yourself. Take care of your families. Remember that a loving and healthy home, family and caregivers are most important for your child. Never feel guilty for prioritizing that over offering every opportunity, service or experience available for your child with special needs. Find the right balance for your family.
“I can’t try every new therapy and every new medication I read about. I can’t be twenty-two places at the same time. I can’t neglect myself and those I love to care for my son. [He] is not the only member of this family, and I have to remind myself often that we cannot let everything revolve around him all the time,” says the mom of a child with Autism.
3. Do find and create a team of professionals, specialists and experts in the area of your child’s concern.
Don’t exclude yourself from the team of experts.
Search out a team that you feel comfortable with and will listen to you. It’s OK to find a different doctor, therapist, school, etc. that you feel works well with you and your child. But remember, perfection is very hard to find, so settle for a good fit. You most likely will need professionals in the medical community, at school, and in the community. Advocate for your child by making allies, not enemies. Find ways to work together with your team, not fighting against them.
Write down your questions and concerns. Bring them to appointments and meetings. Ask questions and seek out information and resources from your team. Write down notes or ask for handouts and copies because you’ll need to remember and refer to that information again. Follow through on important recommendations from your team.
Remember that YOU are THE expert on your child. Don’t forget the importance of your input! No one knows your child like you do. During her first meeting with her son’s school, one mom realized, “Maybe I did know a thing or two that these experts didn’t. After all, they didn’t know that [he] needs help blocking out environmental stimulation before he can focus on a task, or that he will never, ever respond to a loud voice. They didn’t know that music is always the best way to calm him or that he will move heaven and earth for Nacho Cheese Doritos.”
Realize that you will be unofficially appointed as team manager and communications specialist between all team members. Take this job seriously. Learn to gather, organize and share important information from the doctors, to the therapists, to your child’s teachers and anyone else.
4. Do create a realistic perspective of your child’s abilities.
Don’t let your child’s struggles or diagnosis become their identity.
Children with special needs will be different from their peers. After educating yourself and consulting with your team of experts, begin to create realistic expectations for your child. Her condition may always create significant differences from others for the rest of her life. An insightful mother realized that she needed to be mindful of the way she talked to her daughter about her struggles. “I knew that how I framed [her difficulties] would be how she would frame it. She wasn’t bad or broken, her brain just had a different operating system, like computers. How I spoke to her about it would become her inner voice.”
Your child’s condition or diagnosis will absolutely define who they become, but don’t let that be the only defining aspect of their identity. I’ve met nonverbal children who are wheelchair-bound that can brighten the entire mood in a roomful of people with one smile. I’ve met children who haven’t learned to make friends with their classmates, but can explain in detail about differences in a large range of dinosaur species. A little friend in my neighborhood struggles to sit still and listen to teachers, but she has no reservations in calling any person her friend and holding their hand as they walk together.
One mom tells, “[My daughter] still occasionally says, ‘I hate all my issues!’ but I often remind her that although she has a few struggles, she’s so much more than that. She’ll eventually learn coping skills to deal with her [condition], but she’s already mastered things that are really important in life like kindness, hard work, enthusiasm for learning, and compassion.”
5. Do expect your child to achieve.
Don’t forget to celebrate even the smallest of achievements!
“Learning does not come as easily for [my son], and my tendency is to swoop in and make things easier for him, but the only way [he] is ever going to master a skill is if I don’t keep doing it for him. I firmly believe that EVERY child is capable of learning and growth, but we’ve got to stop making excuses for them. Have realistic expectations, but make sure you have expectations,” says one mom. Yes! Progress is possible with hard work. Give your child the opportunity to work hard with the right expectations and support. Your team can help you and your child prioritize and set realistic goals to strive for.
Celebrate even the smallest of achievements! “We celebrate taking one tiny bite of meat or the fact that he’ll not lose his mind over something on his hands… We celebrate all the small things that are an everyday normal to some.” Involve those who know your child well in those celebrations. Not everyone will recognize what big achievements these small steps really are, so share them with your support systems and your child’s team.
6. Do live in the moment.
Don’t forget to laugh!
A wise mother of a daughter with Cerebral Palsy says, “Live in the moment—good or bad—and [don’t] let the future dominate your thoughts. Obviously, make necessary plans, etc., but don’t let worry about future hurdles or joy about imagined future success take up much of your time. It has taken me several years, but I have learned that by living in each moment of each day, I can enjoy the surprising pleasures of this crazy adventure without borrowing trouble from my future self.”
Another mom who often shares funny stories of her son with Autism says, “Humor has saved my life. Laughter changes everything when you find yourself in a high-stress environment, and it has been my saving grace. Cultivate the ability to find humor in the unexpected, and your life will be so much easier!” (I’ve shared many thoughts from this mom, who recently wrote a similar article about receiving her son’s diagnosis of Autism on my blog here.)
Yes, this journey of parenting a special needs child will be exhausting, overwhelming and full of sadness and tears. But, make plenty of room for joy and laughter and fulfillment with your child! Again, I remind you… The child you love is counting on you! You can do this!