Today we share a blog written by veteran parent Janice Lawrence. She writes about her experience with feeling isolated due to the many challenges autism can present.
Guest writer: Janice Lawrence
Right now there are three extra people in my home and still, I’ve never felt more alone. Having a special needs child brings with it a host of complications that are difficult to traverse or even explain. Isolation is one of those difficulties.
When my son was younger, cuter and generally more adorable, I would try to function as I had with my older child. The older and less cute that we both became, the more difficult that became until I am a ghost of the woman I used to be. Today my son is nearly my height and much easier to identify as special. That is a curse and a blessing. On the one hand, people are much more likely to give us a wide berth when we are maneuvering in public. Conversely, that distance is a barrier to any kind of human connection. People are much less likely to approach us today than they were when he was smaller and more adorable.
Over the years I have accepted that there are just things that we can no longer do. It’s just too difficult and the payoff to small to continue. The list includes festivals, parties, fireworks, the Blue Angels, shopping, visiting homes that are unfamiliar – the list seems endless. I used to have friends that had typically developing children but those relationships faded as I became more and more consumed with my son’s care. The friends I have now are all doing what I’m doing – caring for a special needs child and surviving. We used to see one another many moons ago, but our energy for causes and working for the greater good waned as our kids got older.
I would have to say that isolation is probably the most difficult of hardships this life has brought. When I go out with M or alone, I can barely stand it. All around me I see people that I imagine are so much more content than me. I see families sharing meals, laughs, conversations and I’m envious. I imagine that they are enjoying a life that is so much more fulfilling than mine. I think that they are more connected, committed to one another and that there is always someone around to lend a hand. When I am thinking rationally, I know that I romanticize what I see but when I’m in the moment, I am lonely even when I’m in a crowd.
I’m especially lonely when I’m at home even with the extra people that are always here. Between the behavior therapists, behavior technicians, respite and home care attendants, we are rarely alone. Yet I still feel alone and have a love/hate relationship with their scheduled time here. On the one hand, I wish I could just walk around and behave like they’re not here and on the other I dread hearing the lock click when their shifts are done. I miss my son when he’s gone and I can’t wait to put him on the school bus in the mornings. I am also scared to death about the time very soon when the school bus won’t come anymore.
I know that I need to get out more and try to meet people, do things that bring people into my life but for the life of me; I can’t seem to crack that nut. I go to the gym but I exercise alone and haven’t taken it to the next level and joined a class. I have joined a couple online dating sites but haven’t put in the kind of time that is obviously necessary for any kind of success. I don’t know what’s wrong with me. I used to be so outgoing, friendly and funny. I’m still funny and friendly with people I meet on the rare occasions I’m out. I just haven’t figured out how to sustain it over any period of time.
I don’t have any answers to this quandary. I just wanted to put it out there in hopes that others can relate. If you have had success with overcoming isolation for similar reasons, please share. Who knows, I just might learn something. It could happen.
We’d like to thank Janice for sharing her story with us. Feeling isolated in all too common for families living with autism. Share your experience and ideas with all. We have much to learn from each other. Here are some additional tips for those who are struggling:
It’s Important to Know This:
• You’re not alone
• You can’t do this alone
• Asking for help is a sign of strength
• There are people who want to help
• We’re stronger together than alone
• One small step leads to another . . .
• And another
Small Steps to Take:
• Tell a family member, friend, doctor that you feel isolated and need help
• Other parents “get it” – reach out
• Peer mentor or support group
• Internet groups
• Educate others about your child
• Counseling/therapy for yourself
• Seattle Children’s Resource Directory
• Your or your child’s providers
• Friends and family members
• Your religious community
• Professional counseling
• State/county services
• Crisis support
You Can Do This:
• Acknowledge the process
• Trust the process
• Ask for help and don’t hold back
• Believe in yourself and your child
• Draw on past experiences
• Build on small successes
• Tell yourself: “We will be okay – no matter what”