The joys of parenthood. What comes to your mind when I read these words? Images of fun and happy occasions such as games, recitals, and birthday parties probably fill your mind. As a parent of a child with special needs, these “joys of parenthood” can sometimes look different, are delayed, or do not happen at all. This is the realization that many parents of special needs children eventually come to and it is often a hard and painful realization.
My 12-year-old son received his autism diagnosis at the age of 3. Being a social worker, I knew it was critical to get him the appropriate services as quickly as possible. I was prepared to advocate on his behalf to ensure that he got the services he needed but I was not as prepared for the impact that his diagnosis would have on the family. The journey is often unpredictable and some of us sometimes feel as if we are traveling this road alone.
Allow Yourself Time to Grieve
Grieve sounds like a strong word but that is exactly what you need to allow yourself time to do when you have been informed of your child’s diagnosis. Just as you would grieve a loved one who has passed, you must allow yourself time to grieve the parenting experience that you thought you would have. By not allowing yourself the time to properly process the diagnosis, you run the risk of becoming angry, resentful, and envious of those who can experience a more typical parenting experience. All these emotions can lead to you become stuck and not able to fully enjoy the parenting experience that you will have. Despite your experience being different, it can still be very enjoyable and fulfilling. Every emotion is a valid one so allow yourself to feel every emotion – do not suppress any emotion. Allowing yourself to process these feelings honestly will help you move through this process.
Now, this may sound like a direct contradiction of my first suggestion (and you may even still be in the grieving stage at this point) but you must begin doing what you need to do for your child as well as yourself. You will need to educate yourself on your child’s diagnosis and prognosis. What will your child need? Therapists? A special diet or bed? Periodic hospital stays? Getting a realistic picture of what your child will need will help you with being able to mentally prepare for the road ahead. While ensuring that your child has everything, do not forget yourself. There are many support groups online as well as in the community for parents who have a child with almost any diagnosis you can think of. Consider joining some of these groups to get a better understanding of the diagnosis as well as what you can expect next from people who have been where you are. Look into financial assistance from the government as well as assistance through private agencies. This assistance can assist you with paying for therapy, camps, specialized beds, and much more. Taking advantage of this assistance can take a lot of stress off you especially if you were not financially prepared for everything your child will need.
Accept Your New Reality
It is an understatement to say that the life of a parent with a special needs child is different than the life of a parent without one. Depending on the type of diagnosis, there may be some things that you were able to do as a family before that you may not be able to do once you have a child with special needs. After my son who has autism was born, my new reality was that we could no longer go to events that were held in open spaces because he would take off running. Basketball games or fireworks shows were also off-limits because my son had a sensitivity to loud noise. Your new reality could be that you find that your family must have an iron-clad routine, or your child will meltdown. Or your reality may mean that you spend as much – if not more – time at the hospital as you do at home. Whatever your new reality looks like, embrace it. Embracing this new reality will help you with knowing what “normal” looks like for your family. Once you come to know what your normal is, your child’s diagnosis will become easier to manage.
As with any parent, the parent of a child with special needs will tell you that their child is their world and that they are very proud to be their parent. But being a parent of a child with special needs also comes with a unique set of challenges and difficulties. Hopefully, these three suggestions can help so that you can fully experience the joys of parenthood.
If you are a parent of a child with special needs, how did you navigate the first few days, weeks, and months following the diagnosis? What things would you add to this list?