The parent of one of my clients recently returned from a conference related to her youngest child’s genetic disorder, and she told me that the presentation on helping the siblings of special needs kids really only offered one niblet of advice: “Try to give each sibling 10 minutes a day of “just us” time.”
My shoulders, and my heart, fell. Telling exhausted and worried parents that they need to find more time in their day, every day, isn’t fair. This mom could have used so many more specific strategies. She didn’t need another way to feel inadequate to the challenge. When you have a special needs child, you don’t have extra time. Some days you aren’t sure you will be able to shower and shampoo. Even if you could carve out some time by delegating and hiring help, the truth is that living with constant worry about the present and the future, running chronically short on sleep, and perhaps still recovering from a NICU nightmare…this doesn’t lend itself to stellar time management.
There are things that really do help. Among them are getting the right kind of assistance and support, sharing the knowledge you receive from specialists, and handling everybody’s feelings with compassion (including self-compassion) and honesty. Occupational therapists are out there helping families deal with life, since we have a solid background in the science of occupational demands and the psychological responses to illness, injury and trauma. We aren’t psychotherapists, but we study the science of healthy life routines and behaviors. We also spend a lot of time learning what special needs kids need to thrive, and this includes supporting the siblings and parents of our clients.
Here are some of the things I wish that the presenters had suggested:
- Ask your child’s therapists to train more of your family members and caregivers. This means the partner that isn’t the primary caregiver for a special needs child, but it also could be the grandparent or the babysitter that is the backup emergency caregiver. There are parents who feel they can never take a break because a half-spa day would mean that no one knows how to prevent their child from falling down the steps or how to know when a child is going in the direction of a meltdown that will derail the day. If you have a medically fragile child, more people need to know how to keep them safe and healthy. Your child’s therapists are skilled in providing training in their area of specialization. They may not offer it to your other family members unless you ask for it to be done. This is an investment in your peace of mind. Make it happen.
- Find out if your child’s siblings can enter a therapy session and learn more about how to help or encourage their special needs sibling. Therapists can teach your child’s siblings, and because they are seen as authorities and not parents, this can work well to foster understanding and interest. Even preschool kids can learn why the baby isn’t playing with them( but she is watching) and that means “I like you”. Your therapists are pediatric specialists and are good at helping children of all ages, even if your social needs child is an infant.
- Learn methods to spread your warmth and concern without promising time commitments you may not be able to keep. Something so simple (and explained in more detail in my new book below) is to talk with your child’s siblings about your feelings of anticipation before some fun event, even if it is reading a chapter in Harry Potter. Telling them, days ahead, that you can’t wait to be with them can feel so good. Later, you can remind them how much fun you had. Don’t require them to reciprocate. You are speaking about your feelings, and if they brush it off then don’t take it personally. Tweens especially struggle with how to respond. They still need to hear your warmth.
- Express your frustrations honestly, but mindfully, to your child’s siblings. You will both feel better for it. You don’t have to wail and keen, and in fact I would discourage that. You can do that with your partner or your counselor. But your other children need to know that feeling less than blissfully grateful for their special needs sibling is normal and not shameful. When some feelings are perceived as unacceptable, they grow in importance and sprout little behavioral problems of their own. Start by speaking about how tired you are. It is honest and it is probably already visible. Mention that you feel both things; love and frustration. You have to adjust for your other children’s age and emotional tolerance, but I promise you: this is going to really help.
- Ask for help. And accept it when it is offered. Some people don’t think they need help, and some don’t think they deserve it. Some think that it will be seen as weakness or laziness. Some ask for help and get a casserole instead of babysitting. Some get advice instead of a casserole. And some turn down help to avoid feeling as tired and frightened as they really feel deep inside. Think carefully about how and why you don’t have or accept help, and try doing what doesn’t feel natural or easy. It could be the best move you make this week.
- Reconsider the amount of therapy and tutoring you are doing. I know; what therapist thinks you can overdo their own treatment? Me. Overscheduling therapies can backfire when you, your special needs child, and the rest of your family suffer from the demands. The time demands, the loss of participation in real life fun like hayrides and playgrounds, etc. The downtime that any normal person needs and so few parents and special needs kids get. That affects siblings too, in lost time with parents and exhausted parents trying to wedge “me time” into a free moment.
- Make choices about what your priorities are, but allow yourself to have a priority that is not all about your child. For example, you may have to accept that your house isn’t going to be spotless, and that you may be buying rather than making most of the holiday cookies. But if making a few batches of a precious family recipe (my best friend from college makes her Scottish grandmother’s recipe for fruit squares) will make you feel like a million bucks, then go ahead. Yes, life with a special needs child is different from what you expected. But you get to have some things from your previous life that bring joy!
I am so excited to report that my newest e-book is finally done!
The JointSmart Child: Living and Thriving With Hypermobility Volume One: The Early Years is designed to empower the parents of hypermobile kids ages 0-5. There are chapters on picking the right high chair, toys, even pajamas! One section is just on improving communication with your family (including siblings), teachers, therapists and even doctors. No other book answers questions that parents have about finding good eating utensils and how to navigate playdates and social events more successfully.
It is available on Amazon as a read-only download and on Your Therapy Source as a printable and click-able download. Look for more information and a sneak peek at the ways every parent can learn what therapists know about positioning here:The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!