I distinctly remember the day my son was diagnosed. Parents don’t forget receiving that type of news. Somehow, after listening to the cluster of labels applied to my child, I ended up at the grocery store. The clerk asked calmly, as if my world hadn’t just been crushed, “How are you today?” I shoved down my emotions and provided the expected response, “I’m fine.” I wanted to say the opposite. That day, I did not think anything would ever be ‘fine’ again. After receiving a diagnosis for your child, it is natural to feel overwhelmed and to experience a mixture of many emotions: shock, confusion, denial, sadness, guilt, anger - even relief. It may anchor you to remember that, despite the diagnosis, your child is still your child.
A diagnosis is not predictive of whether or not your child will lead a happy, meaningful life. Also, it is not reflective of you as a parent. Your child with a diagnosis is more like other children than different from other children; they want to explore, play, laugh, learn, contribute, love, and be loved.
If you have recently received a diagnosis for your child, here are five steps to help you move forward:
1. Breathe... Give yourself time to absorb and process the news. It’s okay not to be okay sometimes. You have experienced a loss and a period of adjustment is to be expected. Be kind to yourself. Practice self-care and compassion.
2. Become informed. Learn about your child’s diagnosis and research various child-centered services. Explore information of family supports offered within your community, as disability affects the entire family unit. As Calgary has numerous resources for families of children with special needs, you may feel the need for guidance from someone who has ‘been there.’
The Children’s Link Society can help! The agency is a great first point of contact offering information, referral, and support. Experienced Family Support Workers, who are themselves parents of children with special needs, are available to speak with you on the phone, meet in person, or connect via email or online. Children’s Link maintains a current resource database of available services and supports on a wide variety of topics such as funding, counselling, respite, aides, therapies, school options, assessment, disability-serving agencies, support groups, recreation options, and much more. In addition, the organization offers workshops for parents on relevant topics and hosts monthly Coffee Social support groups.
3. Ask for assistance. Contact Family Supports for Children with Disabilities (FSCD). The FSCD Program helps families with some of the extraordinary demands of raising a child with a disability. Services are meant to help strengthen the family’s ability to promote their child’s healthy development and encourage their child’s participation in activities at home and in the community. Visit humanservices.alberta.ca/disability-services/14855.html or call the intake line at 403-297-6022. Children’s Link staff can also provide you with information on the FSCD program and assist you with an intake application.
4. Shift into ‘business mode.’ As a parent of a child with special needs, you have a challenging job. Taking a step back from your emotions and moving into business mode temporarily can enable you to manage the care of your child more effectively. Learning efficient ways to organize paperwork, to document and share information with others, and to manage meetings and appointments will be of benefit as you work on behalf of your child. To receive the free resource book, My Child My Business, drop by The Children’s Link office located in Calgary at #211, 8855 MacLeod Trail SW.
5. Connect with others. Do not stay isolated. It is valuable to reach out and connect with others. Consider joining a parent-support group through Children’s Link Society, another disability-specific agency in the community, or a social network online. Other parents can help you manage stress, serve as a source of information on community resources, provide suggestions, and even get you to crack a smile once in a while!
As you adjust to receiving a diagnosis for your child, know this: There is hope and you are not alone. Be encouraged, for as you continue your journey, you will establish a new normal and experience joy once again.
Sandra Werle, M.Ed., is an Educational Consultant/Family Support Worker at The Children’s Link Society. The Children’s Link Society connects families of children with special needs in Calgary and area with the services and supports they need, when they need it. To speak with a Family Support Worker, call 403-230-9158, visit childrenslink.ca, or connect via Facebook, facebook.com/childrenslink, and Twitter @ChildrensLink.
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