The variety of responses parents have to their child’s diagnosis of a special need, whether it is physical or mental, is as varied as the number of diagnosis’ that exist. However, much of the process a parent goes through after a diagnosis is the same.
Regardless of what diagnosis your child receives and what type of special need they have – your child is still your child. They are not their diagnosis. They are yours, and more than anything they still need the same core things every child needs – love and security. No matter how out of control, lost, or inadequate you may feel, you can always provide for their need to be loved securely.
Also, know that there are many diverse ways to implement the following. You may even find yourself moving through this differently than your spouse, which does not mean that they do not love your child. It simply means there are many different and good ways to adjust and move forward.
Grieve – Grieving is probably the most difficult, guilt-ridden part of the journey. All parents go through this to some degree as their children grow and change, but it is often more acute when your child is diagnosed with an unexpected disorder or special need. Allow yourself to grieve what you have lost – whether it is the idea of what you thought parenting would be like, what you thought your child would be like, changes in lifestyle, finances or freedoms. Grieving does not mean you love your child any less, but it does allow you to love them more fully.
Connect – Any time we encounter something new and unexpected, we need support. No one was intended to walk through life by themselves. Often, one of the hardest aspects of parenting a child with special needs is feeling like you are on your own. Search for groups of other parents who are raising children with a similar need or diagnosis to that of your child’s. Not only will this provide wisdom for your journey, but it will also give you immensely valuable friendships, comradery and support to help you meet your child’s specific needs.
Ask for Help – Typically, those you ask for help are more than happy to give what they can. As a former teacher and current counselor, it is a great privilege to have a parent ask me to help join them in meeting their child’s needs.
My sister Amber Latimer, a Master’s level special education teacher in Northwest Arkansas, says ‘You are your child’s primary advocate. You know your child better than anyone else. Research can be informative, but it does not define your child’s personal journey. It’s important to trust your gut as a parent and to know your rights and the law.’ If possible, be specific about the help you need. Again, most people are more than happy to give help, but they may not know your specific need.
Say No – Not all help is beneficial. If someone’s help is burdensome, do not feel bad for saying no. Again, you are your child’s advocate and you can set up helpful boundaries to protect and guard them from the unhelpful demands, assumptions or requests of people and/or institutions.
Self-Care – I have mentioned this in previous articles, but the truth of this concept remains: You cannot be helpful to your child if you are falling apart. Care for yourself, your marriage, your friendships, etc. Never be ashamed of needing care from others. No one was designed to be self-sufficient. Just as they tell you on an airplane, if the cabin loses pressure (i.e. – life gets hard) put the oxygen mask on yourself first before helping those around you. This goes beyond asking for help or seeking support to raise your child, but involves asking for help and support for you as you are raising your child.
Celebrate the Small Stuff – Oftentimes we focus on the biggest problem, obstacle or achievement that lies in front of us, which can cause us to overlook the small accomplishments and milestones that come our way. Rather than looking for big changes, allow yourself and your family to enjoy and celebrate the small successes and accomplishments along the way. Splurge on ice cream, go to the park, buy a new toy, whatever helps you applaud the small stuff.
Be Wary of the Internet – Once you receive news of a diagnosis, your first response will be to try and understand it, which may grant you some sense of control. This is normal, but the wealth of information online (both valid and invalid) is like a black hole waiting to overwhelm you. Try to temper yourself. Talk with and trust the experts rather than relying on the self-proclaimed authorities of the internet. Again, this is where established support groups can be so very helpful.
In the midst of all the support, education, and self-care you seek out, know that more than anything your child simply needs you. Take care of yourself, extend yourself some grace, and know that your love provides the secure base they need to grow and flourish.