99 Problems

Published on January 13th, 2016 | by Rachel Penn Hannah

19

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.

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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.

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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.

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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.

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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.

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Photos by Hannah Zari

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About the Author

Rachel Penn Hannah

Rachel Penn Hannah is a clinical psychologist who works in an intensive eating disorders program. Rachel lives in the San Francisco Bay Area with her wonderful husband and three kids, ages 15, 18, and 21. She has two essays in the book Easy to Love, but Hard to Raise; Real Parents, Challenging Kids, True Stories. Rachel also has been a contributor to the book’s sister blog and is working on a memoir about growing up in Berkeley, California in the 1960’s and 70’s. When not mothering, working, driving or losing her mind, Rachel tries desperately to find time to write and do yoga.



19 Responses to EIGHT THINGS I WANT TO TELL THE FRIENDS I NEVER SEE: Rachel Penn Hannah on Parenting a Child with Special Needs

  1. Dear Rachel, may I give you a big hug? (((((((((Rachel)))))))) As foster parent to a four year old, traumatized and extremly challenging kid, I want to thank you for your honesty. I am still holding it against me that I’m not able to give friends and family the support and time they deserve. It’s SO GOOD to hear that there are others out there, feeling/doing the same (including the Yoga-thing ;-)) Thanks so much.

    • Rachel Penn Hannah Rachel Penn Hannah says:

      Thanks so much for the hug and I send one back to you! This is such an isolating journey. But you are definitely not alone. Do you live in Germany? You are my hero for fostering a four year old who clearly needs someone like you. He is quite fortunate. Thanks again for writing. : )

  2. Kristine Mietzner says:

    Your essay touched me deeply. Love and care is such hard work.

  3. dana says:

    One of the most wonderfully honest pieces I have ever read.

  4. Jessica says:

    Thank you for sharing, I know in some small way how you feel. Wishing for you the peace of mind in knowing that you are clearly an amazing mother and friend. Hugs.

    • Rachel Penn Hannah Rachel Penn Hannah says:

      Thanks Jessica. We are all just doing the best we can, right?
      Some days/weeks are harder than others, but I have found that being more honest with my friends has actually helped me to feel closer to them. So there is that.

  5. karmakath says:

    I hear what you’re saying loud and clear. I feel that way so many days and all I can do is pray, because that’s all I have left, you know?

  6. Stella Nambi says:

    U r a remarkable person , may God continue to give u strength as u inspire others . I pray that God gives u double portion of His blessings . I can understand it’s not easy , my oldest and youngest r doing great I thank God for His abundance of mercy and grace I came here with three children 12,6, and 21 month old from Canada my husband didn’t like his job in Macon so he went back to Alberta Canada we have a house there. He was mugged at gun point in Bethesda so he said this isn’t the place for him but my kids were going to Adventist school and I had my job here the weather was good , we have a caring church so we stayed we do go back and forth to Canada . My second daughter when she reached puberty had polycystic ovarian syndrome and then microadenoma of pituitary gland then with her hair loss and hair growth on the chin would hide in the bathroom in school for many hours to top it she was bullied by her classmate she had taken her phone and used it causing $700 in ph bill used 30,000 mins and 14,00 text messages school suspended her for few days the mother said she will pay in installment and after two cheque of $100. She moved away to a different school but it left scars in my child she went into depression couldn’t complete 11 th grade she has ADHD inattentive type and was in spec Ed it breaks my heart in the whole church there is only one her age who would take the time to talk to her sometimes it takes us 3 hrs just to get her in the car to church she looks normal she smiles beautifully but had so many challenges these 14 yrs working as a critical care nurse night shift and being there for my child it has not been easy but pastor in my church faithfully prays for all my children by the grace of God my youngest daughter is in swim meet I go swimming I used to do yoga in Canada and swim so between work and home and church I take I hr for me . My God is a wonderful God He gives us strength day by day everyday is a gift from above . From one mother to another I know it is not easy God doesn’t allow anything more than we can bear and He provides a way . Praying for u with christian love Stella.

  7. Aimee says:

    Thank you! Thank you. Thank you. My life turned upside down a year ago when one of my three neurotypical children became suddenly extremely mentally ill. The kind no one talks about. I left the career I love to care for her full time for her safety as well as her siblings. I have fought and searched for treatment to help her. The thing that saves me is connection. I savor the moments of connection with others even if they are far and few between. Thank you for beautifully explaining your experience. I feel like I’ve joined a club I was too naive to know existed.

    • Rachel Penn Hannah Rachel Penn Hannah says:

      Thanks for writing and sharing Aimee. What a huge sacrifice you have made for your children. I did this too a few years ago. I quit working to be at home with my daughter. In my case, however, it didn’t seem to help her and after 11 months I was losing my mind. For me, I have found working three days a week helps me with my own sanity. And then there’s the money for all the expenses associated with my daughter’s needs. Your children are fortunate to have you. I love how you look for moments to savor. I relate to this. It is in the smallest of spaces that we can find solace or even joy. Take care.

  8. Christina says:

    Thank you for writing this piece. It is how I often feel, except I prefer running over yoga. “…it’s just too painful to hear about your neurotypical kids…” is spot on for me lately. My son is a senior in high school going through yet another severe bipolar depression episode. While I am focused on keeping him alive and possibly staying in school, I really can’t handle hearing my friends (that I truly love) talk about college acceptances and scholarships. Perhaps I will later, but not now.

    • Rachel Penn Hannah Rachel Penn Hannah says:

      My heart goes out to you Christina. You definitely have your priorities straight! Keeping your son alive is definitely the main goal with someone experiencing a bipolar depressive episode. School? Definitely second. Way behind actually. And yet, it can be painful to hear about neurotypical kids. I hope you have support. Thanks for commenting. Best to you and your son!

  9. Bree says:

    Yes……a thousand times, YES!
    Now I need you to write the eight things we want to say to our neurotypical children, as well as the eight things we want to say to the neorotypical children who our child comes into contact with.
    You saying this life is isolating and frustrating resonates with me on so many levels. It’s isolating and frustrating for us, our neurotypical children and ESPECIALLY for our special needs child.
    My child has no friends either. When I find people who have children that are kind and willing to accept not only my neurotypical children, but also my sweet girl regardless of her social and emotional challenges, it becomes even MORE vital for me to try and nurture that friendship……Though I too fail them more often than I’d like.
    Because it’s not only me who NEEDs those connections to the world outside the one my girl’s illness has created for us.

    • Rachel Penn Hannah Rachel Penn Hannah says:

      I agree completely Bree. I am so greatful for those that are accepting of my child who struggles. They are gold. And the siblings do suffer as well. The important thing is that we are all in this together, doing the best that we can. Thanks for writing.

  10. karfro says:

    this weekend I finally got together w/one of my best childhood friends, a mother of 3 including one with special needs. she’s hurt my feelings SO many times, and after she twice rejected my offer to come up for a visit (a long subway ride for my own young boys and me), I almost didn’t ask a 3rd. ended up so glad i did. In her case, I do feel she’s put some other professional friends, as well as her kids, ahead of me – but I need to stop judging. she’s an amazing mother and I won’t give up on her as a friend, so this article really hit me. Thanks.

  11. Marie says:

    Thank you so much for sharing your story. Your story is my story. The isolation is crushing. My 11 yo son just came home from an 18 day hospital stay due to self-injury and talk of suicide. Nobody except my mom knew he was there. He has no friends, so nobody was wondering where he was – which is perhaps a blessing so that I didn’t have to explain. He’s returning to school (therapeutic day school, thank goodness) under the pretense that he was “sick” because he doesn’t want to share, either. My heart aches for him.

    Thanks again for your candor in writing this article, it was cathartic to read, and hopefully informative to others who have friends in similar situations. I’m sorry for your struggles and wish peace and strength for your family.

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