When my son was diagnosed with autism at age three, a wise and dear friend of mine who is an educator told me, “Don’t pathologize your son. He is not his autism.” These were important words for me to hear when all anyone else around us — early interventionists, therapists, and teachers — were talking about was autism, autism, autism.
Connecting to my son, to his essence, and not only to his autism, has been essential to the way that we connect and the way that I understand his humanity. His autism diagnosis is a part of him, just like my Type 1 diabetes is a part of me, but it’s just that.
The other thing I wish someone had said to me back in those days was, “Don’t let autism take over your family.” When my son was diagnosed, my daughter was a one-year-old, and it was extremely hard to balance my children’s needs, let alone pay attention to my marriage. I felt like I was drowning in phone calls and paperwork, trying to arrange the supports that my son needed.
But in time, I realized that I needed to put on my oxygen mask first. If I was an emotional, depressed, stressed-out zombie mom, I wasn’t going to be able to fully help my son, support my daughter, or be a present partner in my marriage. I realized that being an autism mom meant that I still needed to make time for date nights with my husband and girls-nights out.
It’s also meant nurturing my relationship with my daughter away from her brother. We’re blessed that, like so many siblings of brothers/sisters who have special needs, my daughter is extraordinarily accepting and loving, and has deep wells of compassion, not only for her brother but for other kids, animals, and the planet. But she also needs to get out of Dodge and be able to forget about autism on a regular basis.
Now that I have my own experiences with a special-needs child, I’d like to add three strategies that have helped us over the years:
Let the sib acknowledge what is difficult. During times that are peaceful and calm, my husband and I might talk to my daughter about our son’s autism and help her to understand his challenges in a developmentally appropriate way. But when things are hard for her because of my son’s autism — he’s invading her personal space, crying for no reason we can discern, or jumping around the living room when she wants to focus on her TV show — we don’t get preachy. When she says, “I hate autism!” or “Why can’t I have a normal brother?” we simply affirm that it’s a challenging moment. As she gets older, we are also seeking opportunities for her to be with other sibs so they’ll have the chance to vent together.
Make extra special time away from home. There are many activities that we like to do as a family, but we often have to moderate times out in the world around my son’s sensory needs. My daughter can spend longer times in a museum, has the patience to wait for a meal at a nicer restaurant, and is an excellent traveler on all modes of transportation. We want her to have the opportunity to enjoy those experiences, and we make sure to set aside time so she can be with mom or dad and enjoy something that might be challenging for my son.
Find a community of support outside of the immediate family. We, parents of kids with special needs, are mostly an exhausted bunch, even on our good days. When we’re dealing with a crisis with my son, it’s hard to give my daughter as much attention as she would like, but we are fortunate to have some wonderful aunts nearby who can step in when we’re burnt out. We’re also part of a synagogue community that is like a second home to my daughter, where she receives lots of extra love and support from a large group of adults.
Of course, these are just a handful of ideas that have helped us nurture both of our children. I would love to hear yours.