Published on January 13th, 2016 | by Rachel Penn Hannah19
EIGHT THINGS I WANT TO TELL THE FRIENDS I NEVER SEE: Rachel Penn Hannah on Parenting a Child with Special Needs
Yesterday I found out that I had disappointed a friend. Once again. Isolation and frustration have been closing in like walls. It’s a struggle shared with many parents of kids with special needs, who feel unable to maintain active friendships. I think about the small group of women who I hold dear to my heart, the ones who know me best, the ones whose children I love, some friendships formed long long ago, a couple formed within the last ten years. I wish I could be the friend that could be called on at the last minute to go to a movie or for a hike or to meet for a glass of wine. I wish I could be the friend who regularly invited friends to dinner, who occasionally takes weekend trips with the group.
Instead, I am constantly weighing, trying to figure out what my child who struggles with emotional challenges needs on any given day, in any given week, at any particular moment. Many parents of neurotypical children would probably say come on, you have to make time for yourself too, your kid is a teenager now, and sometimes these friends may even think I am making the problem worse by “indulging” my kid with too much support. I get it. I do. It has taken me many years to simply get to the point where I now regularly go to yoga twice a week. Yoga is purely for me. But if this sounds minimal, you would be missing the point. In addition to an intense and demanding career (for which I am grateful), I have an unofficial job of care manager for my special needs kid which often adds hours a week of emails, phone calls to therapists, psychiatrists, and school administrators and staff. Then there are the appointments with various helpers plus hours devoted to taking my kid to spend time with a horse we sponsor, which helps to keep her from losing her mind.
There are also the many trips to the pharmacy, the weekly medication prep, as well as the emotional support and worry that is daily, nightly. Even waking her up in the morning is a huge chore, every single day. It all requires the emotional as well as physical presence of a parent. My husband has more than a full-time job and plays as big a role as he can after he comes home at night. But it still takes the exhausting energy of two to parent our wonderful and challenging child. I can’t imagine how hard this would be as a single parent. Oh, and that reminds me, I have two other kids. These relationships also require time, which I must and want to give. Despite my best efforts with these three other precious people (husband, other daughter and son), I often feel that I am not giving them enough.
There is never enough.
So yoga twice a week has been a huge victory, and essential to my health. I also will myself go to bed at nine each night, in order to get enough sleep, despite the pile up of undone chores, despite wishing I could call a friend to describe my draining day supporting my anxious, suffering teen who wants nothing more than to feel better. And outside of school, which is a constant struggle in terms of just getting my kid there and staying for the whole day, my husband and I are now all our special needs kid has. No friends. None. So we feel a need to be home a lot.
It’s been like this for fifteen years. I thought of some things I wish my friends with neurotypical kids knew about my experience. Here it goes:
I vacillate between hope and despair on a regular basis. On any particular day, week, month, year, etc. Sometimes from moment to moment. Recently we had a meeting at my kid’s teeny tiny small and super accommodating private school. We were told that the school may not be able to keep our daughter as a student, that her needs might exceed their capacity. I left the meeting in tears, knowing there are currently no more back-up plans, no other apparent viable options. The constant underlying fears related to my kid’s future engulfed me. Yesterday, however, day three of her bringing an Emotional Support Dog to school, things seemed to be improving. I had calmed down. Then I got home from work to be confronted with my daughter’s intense anxiety after having a “terrible day” and the emotional fall-out of this kept us all up until she finally was able to sleep at 1 am. Then I lay in bed unable to sleep myself, back to despair. Sometimes I am able to ride the waves. Sometimes I get submerged.
I am an expert at judging myself for having a kid who struggles and at times can’t help but assume you are judging me too. The typical parenting approaches most are familiar with do not apply or work with my kid, don’t even begin to touch the extent of her challenges. Trust me. I’ve tried them because they helped me effectively understand and parent my other two kids, but I’ve learned over and over again, the hard way, that the approaches you would take with a neurotypical kid or teen can actually escalate things, making the situation worse.
Being spontaneous is not a capacity my kid has. To the contrary, she tends to need lots of warning and preparation for upcoming changes to the routine, which rolls uphill to us parents in terms of our ability to be spontaneous with friends.
I cancel plans at the last minute more than your average friend and I don’t want to. It’s not just that I can’t be spontaneous; I also can’t be as reliable to others outside of my family. A cancellation might happen because there was a huge emotional breakdown or rage that afternoon. It could be because my kid is so anxious that being left alone is not an option. It might be because I am sensing that my daughter needs me to be home for no specific reason other than a gut feeling I have based on the culmination of weeks stressful events. It might be because as a much as I desperately want to be a real friend who joins in the fun, I realize I am just too damn tired, tired to the bone. The reason I most recently disappointed a friend was by canceling our plans two times in a row, once when a psychiatrist appointment for my kid suddenly seemed urgent after an especially difficult week which had been filled with anxiety attacks and sleepless nights. The second time, I cancelled because I simply couldn’t get myself going on a Friday night, because I was emotionally and physically drained and did not feel comfortable leaving her. Right or wrong (I never know), my instincts told me to stay home.
There are times when is too hard to put on a cheerful face and in this case I worry that I have become That Person. The Downer. The Yes-But-Er who has a reply to everything, explaining why all of your well intended suggestions won’t work. The Same-Old-Story-Gal singing the same sad song. Who would want to be around me, I think. I don’t even want to be around myself during these times. Ironically, sometimes I find being around strangers or colleagues a lot easier. I can stay on the surface of life. It is when I am with people I feel close to that the darker feelings automatically come bubbling up and threaten to spill over, that I am unable to keep them down.
This one is hard to admit. On rare occasion, it’s just too painful to hear about your neurotypical kids. I feel tremendous guilt about this because if we are good friends, I actually know, love and genuinely want the absolute best for your kids. But sort of like when some friends of mine had been unsuccessful with infertility treatments years ago and they had to say no to going to yet another baby shower out of self protection, sometimes it is too much to hear about your child’s successes or even simply how normal your child’s problems may be as evidenced by playdates and sleepovers and dances and overnight camp, swim team and soccer, etc. At these times, it hurts as much to hear about your kids as it does to know that I can’t hear about your kids. And let me be really clear about this. On the rare occasion that I am feeling this way, I would never put you in the position of telling me about your kid while I secretly cringe. Instead, I hide. I don’t call or get together. I do love my friends’ kids. On the flip side, it is often and usually is the case that hearing your news, about your life, is such a welcome relief, a much-needed break from the seriousness which often grips my guts. It is not up to you as friends who have neurotypical kids to figure out whether or not I can tolerate hearing about the normal world on any particular day. If I can’t, I’ll retreat until I am ready and eager again.
PLEASE don’t take my limited ability to be an active friend personally. I realize it is almost impossible to understand, but, trust me, it has nothing to do with you. I love you. I like being around you. I want to be with you, having fun, building memories, and actually know that I’m missing out, not on a good time but missing out on experiencing the deep connection we share.
And, finally, please please please, don’t give up on me. Don’t write me off. Although I would understand if you did. You are in my thoughts and heart and I long to be together. I need you in my life.
Photos by Hannah Zari