So, you have a diagnosis
It breaks my heart the moment a family arrives in my clinic with the fresh news their son or daughter has recently been diagnosed with autism. Please don’t get me wrong, I am not the pitying kind; in fact, it’s the complete opposite.
I feel very strongly in arming families with the truth about their new reality.
I want them to understand this new life is a marathon, not a sprint, and that it is vitally important for each parent to understand he/she will each come to terms with it at his/her own pace and in his/her own way.
Some parents begin their autism journey by enrolling in every single program they can find, spending hours on Google locating the best treatment options, and making connections in every online autism community.
Whereas other families come fresh out of the gate without much of an understanding of what has just happened or what the future holds.
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But no matter where a family falls in their journey, when we meet, at some point in the conversation all families eventually ask me this one question: “Will my child be okay?” Each time this question is asked I unfortunately have to admit I have no idea.
I have been working with children and their families for 20 years and no two have the same trajectory, although some may have similar abilities. One thing is for certain: caregiver involvement is a definite predictor of success in any family and thus holds true in families with children diagnosed with autism.
Breaking down the family unit
The strength of a family takes many forms. Often in my work I see a variety of families who are comprised of members who take on specific roles. It is not only mom or dad who takes the lead in their autism navigation. In my practice I have encountered either mom or dad taking the leadership role.
I very rarely encounter a family with both parents involved at the same level, meaning one typically is in charge of the meetings and the organization of services while the other tends to take more of a home-life role. However, no matter the role a family member plays in his/her child’s life, stress and burnout are inevitable, and minimizing the effects of this on the family is crucial for the family’s mere survival.
Stress in families with children with special needs has been linked to increased anxiety, depression, and even marital discord. Parents and caregivers who practice self-care regularly are more likely to combat associated caregiver stress and burnout more readily than families who do not.
Self-Care for the whole family
Self-care has become the newest phrase. We hear about mindfulness daily as well. Even in Applied Behavior Analysis (ABA) we are beginning to use this language more and more frequently. Self-care is an opportunity for the family member to take time out and focus on the care of himself/herself, even if it is for a short period of time.
Each member of the family tends to have a significant role to play within his/her unit and should therefore be provided with the much-needed time away without feeling guilty for not being expected to be “on” at all moments of the day. The benefits of self-care also allow a person to come back to his/her family with a different mindset, ready to take care of the stress.
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The top five things families can do
Take breaks, often
Regular breaks from family life day-to-day can help to combat burnout. You do not need a full week solo vacation, but planned evenings out or an afternoon of shopping can provide a much-needed mental break from the daily grind.
Remember your partner
Remember you need to ensure your partner gets attention from you as well as your child. A strong partnership creates a strong family foundation.
Yes, it is hard to find common ground with those who do not know your reality, but sharing the load can help you feel connected to the rest of the world.
Learn to be mindful
Guided meditations can help to ground you in the present moment. This helps you to take a step away from your daily stress, even if temporary.
Plan special times to connect with your other children and/or family
Your other children need your attention as well. Spending quality time with your children will ensure a very strong bond develops between you and ensures everyone understands where he/she stands in your family. These same children will eventually be their sibling’s caregiver and need to know how much you respect them for that future gift they will be giving you. Your parents will not be around forever. Please do not give up on that connection, even if understanding your life is not easy for them to do.
Taking care of someone 24-7 is a really difficult job. You can feel as though there will never be a moment for you to take the self-care time you need and deserve. It is, therefore, crucial to set up some specific strategies that will ensure you are able to take care of yourself so you can take care of your family.
First, ensure you find appropriate care for your child. Your child goes to school or therapy, your child has some respite dollars, your child has grandparents, or your child has another parent. Second, once you have identified your alternate-caregiver rotation, you need to carve out time for yourself.
If you don’t schedule it like the dentist, you most likely won’t get it in. Make a weekly date with yourself in your calendar and share it with the person watching your child. Finally, automate and delegate tasks. Your time is valuable. Prioritize self-care activities wherever possible.
Self-care is a practice that gets easier the more you do it. It also does not come without some premeditation and planning. You are worth every moment you spend on it, and your family will truly appreciate all of your efforts.
This article was featured in Issue 104 –Transition Strategies For Kids With Autism