What to do when you have a newly-diagnosed special-needs child
Are you a parent who is awaiting a frightening diagnosis for your child? Or have you just received that diagnosis and you are reeling? This is a time of life that few of us expect to encounter, but many of us do. It can be one of the most stressful, confusing times for a parent. Some common concerns include:
- How will I figure out which therapies are best for my child?
- Is there school assistance available and how do I apply?
- How will we pay for much-needed therapies and related expenses?
- Will I be able to keep my current job and still care for my child/children?
When you combine all these issues on top of an already-hectic lifestyle, remembering that you also have a spouse, other children, and a household to run, this can lead to a mental breakdown. As a parent who has gone through the diagnosis process with a child not once, but twice, I would like to share some tips that worked for me. This is by no means an exhaustive list and I urge you to consider your unique needs during this process.
1 – Take some time to acknowledge your emotions. It is perfectly ok to grieve. It is also perfectly ok to have other kinds of feelings. In these early days, take a moment each day to do something to help you process your emotions: call a relative or friend who will listen, write in a journal, exercise, garden, knit, etc. It’s important to carve out a few moments for yourself, even though it’s hard to do so.
2 – Look online for resources that may provide some help and clarity. If your child is diagnosed with autism, I recommend the 100 Day Kit from the Autism Speaks website. If you’ve received a Downs Syndrome Diagnosis, check out the New and Expectant Parents Section of the National Downs Syndrome Society website. There are many other diagnoses, so use a search engine to locate a group or society regarding your diagnosis.
3 – Focus your energies on what you can do now. Try to avoid regretting something in the past (“why didn’t I recognize his symptoms sooner?”) or worrying about the future (“will she ever be able to live independently?”). Only spend time and energy on what you can control today (“I will call an Occupational Therapy practice and find out how to get an assessment for my child.”)
4 – Ask for help. Other people can’t read your mind, not even your spouse or your best friend. You are not weak if you ask for help, you are wise. Find support groups, extra caregivers, a counselor, whatever you need to help you stay sane.
5 – Make some time to tend to your marriage or relationship with your partner. Divorce rates are higher among parents of special-needs children, though they are not at 80%, as the media once reported. If you can train and hire a sitter or family member to watch your children, then go on a date night. If that’s just not possible right now, plan a special dinner after the kids are in bed. For more tips on caring for your marriage, read this helpful article from the Washington Post.
6 – Do some “normal” things as a family. It’s easy to get caught up in all the therapy and doctor’s appointments. Sometimes it’s hard to take a special-needs child on an outing. But it’s worth it. Make the effort to build some family memories together, even if everything is not perfect. Visit parks, farms, zoos, or child-friendly museums together.
Parents need to remember to consider their own mental health during stressful seasons of life. Please contact your physician if you suspect you are depressed or not coping well. Receiving a difficult diagnosis for a child can be devastating, so take care of yourself as you adjust to your new family routine.