by Emily Minich
As I write this, I'm sitting in my living room waiting on my daughter's occupational therapist. Ilse has therapy six times a week... two OTs, two PTs, and two STs. My sons also have therapy, but not as often. We recently had to decrease my older son's therapy amount because his mental health issues revealed themselves in a terrifying way. After that we decided to lessen his load and give him time to be less anxious by having plenty of 'me' time.
I was thinking about all these things when I read the article a friend wrote about the 10 Friends Every Parent of a Child With Special Needs Could Benefit From. It hit me: what do you do when you don't have these kinds of friends? Who do you share these hard moments in your life with?
I was 20 when I got married to my best friend. My husband has cerebral palsy and nobody works harder than he does. We got through college together and began the long search to find employment in his chosen field. I was 32 when he found his teaching job. I was 28 when we adopted our two sons who came from very difficult circumstances, and I was 29 when our daughter with special needs was born.
I certainly don't want to lessen the thanks that my heart daily feels toward my family for all the support they've given me throughout these hard years, and indeed, I'd call one of my sisters 'my best friend.' But for the longest time, my family was it. As I sat reading the article above, the feeling of being alone that often sits on top of me like a heavy mantle became twice as heavy.
JourneyFEST was born because of that evil feeling Alone. Our facebook community is quickly filling the gap that I've felt for so long. They are who I have turned to in my dark moments. When my daughter was sick in the hospital, my JourneyFEST friends visited me. When my son nearly took his own life, my JourneyFEST friends virtually held me as I cried. When I feel I can't go on, my JourneyFEST friends stand along the Special Needs Road and cheer me every step of the way.
If you are accompanied by that Evil Feeling Alone, you can't wait for someone to reach out to you. It might not ever happen. And yet I know the thought of reaching out yourself is exhausting, overwhelming, and painful. But if you steel yourself and decide to do it, you will be richly rewarded. Start by finding an online group where the other adults are actively present in the online community. You can join us in our closed facebook group.
If there isn't a group you'd like to join, you can start one. I know, it sounds daunting, but all that's really needed is a desire not to be alone. You can ask your child's dr to give your name to other moms of special needs kids or you can run up to people in parking lots like I've done. I don't know a single special needs mom who would be averse to meeting others, so don't be afraid you'd be rebuffed. Grocery stores and schools are also a good place to meet other special needs moms. Once you've found a few, you can schedule a play date or if you are one of the fortunate ones with a babysitter, you could plan an evening out. Whatever you schedule, you've already done the hardest part. You've begun.
Once you've found your group, strive to become an active part. Introduce yourself and share your experiences. Soon you'll be making friends who will cross over from only online friends to 'in person' friends.
JourneyFEST has annual holiday parties, park days, and Moms' Nights Out so that all of us online friends get a chance to visit in person. Just like the friendships you've had at other times in your life, these friendships take time to grow, but they will grow. Thankfully, we parents are starting from the same place: being a special needs parent. That common ground is worth a lot in the dark of night when your child spikes a temp and you need to talk.
Slowly I'm finding the few online friends who have the potential to be wonderful in real life friends. I hope you find yours, too.
When You Don't Have Those 10 Great Friends
JourneyFEST @ 2013