Thursday, April 24, 2014

When friends don't get your special needs life: Group therapy


"My husband and I are having a hard time right now relating to our friends," read the message on my Facebook page. "They just don't get it and we have begun to feel as if we are now being treated differently and not included anymore due to the fact that our daughter is disabled....  I have begun to feel that good friends are viewing us as 'complainers' because we have more struggles than the average family. When friends do call and everyone is together, we feel ignored.... I think having others' perspective will help us feel not so alone."

It's hard not to feel excluded as a special needs parent, because sometimes you are. I used to do girls' night out with a group of local women. All of us had kids around the same time. They started having playdates, and Max and I were never invited. I complained to the therapist. "Maybe they're not your friends," she offered, and I thought that was cruel of her to say. But eventually I had to acknowledge she was right. Those people were just acquaintances, ones who didn't know me all that well. They weren't up for handling a special needs baby who wasn't developing like their kids, and his worried mom.  

Even good friends may not be sure how to behave around you. I remember one telling me point blank when Max was close to three and not yet walking that she was never sure whether to invite me to out, like to the park, because Max couldn't run around like her kid did. "We'd love to come, just to be with you," I said. "We'll figure out fun stuff for Max to do." And we did. In retrospect, I wished I'd been more proactive about making plans with people instead of feeling sorry for ourselves when we had none. 

I have wonderful friends who have always been there for me—to listen, offer advice, or do whatever they can to help (my girls Wendy and Hedy watched Sabrina when Dave and I took Max to Duke University to get his stem cell infusion five years ago). I have also found comfort and camaraderie in this online community. And when Max was little, I saw a shrink. It was a relief to freely grieve, rant and cry to someone without concerning myself that the conversation was too one-sided.

How about you: Have you felt like this mom does? How have you handled it? 


19 comments:

  1. I have felt like that more times than I care to count. As for the difference between friends and acquaintances, I always say that my special needs children helped me learn who are my true friends! Online can be a God-send. It can also be a vindictive and judgmental place where people will say things that they would never have the guts to say to your face. Personally, I would recommend finding people at your child's school/therapy/camp. The parents there will "get it" and you will make wonderful new friends to replace those that aren't strong enough or open enough to understand and accommodate your kiddos.

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  2. This is a constant for me and my husband. It's difficult to retain friendships the way they were when something "different" is going on with your family. My husband and his best friend of 25 years have drifted apart due to lack of understanding or even an attempt at understanding despite our best efforts. Sometimes it's easier to keep the blinders on, I suppose.

    I have been fortunate and have several friends who still include me and my daughter in activities even if we can't fully participate in them. But I do have a few who have backed away slowly.

    Like Ellen, I have found a terrific network online. I've had the good fortune to connect with a couple of bloggers I read regularly and had the chance to sit down with them. I have a group of moms that I met online prior to my daughter's diagnosis and they are still our biggest cheer leaders. Now that I am home with my daughter I've joined a couple of local meetup groups and even started one for families of kids with special needs.

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  3. Ellen....
    First things first. Before reading your beautifully expressed words, I feel compelled to comment on this Facebook friend's. Here goes. I can totally relate to this. One-hundred percent. Except for a cosmic difference. But I can totally relate to this nonetheless. For us--I have learning disabilities and my youngest brother has Down syndrome--it was never really our friends who alienated us. But worse. It has been our extended family. For several reasons combined. We have "special needs". Mom homeschooled us. {And did an incredibly good job!!} We're church-going Christians. {They are not.} That being mentioned, I feel for this Facebook Friend of yours. ;)
    Sorry. Long comment!! ;-}
    Love you later, Raelyn

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  4. I can relate. It became easier for my friends to stop including me because they didn't have to plan wheelchair accessible friends. My life becomes every Friday night watching full house at home. People say making things accessible here would be a waste if I don't use them since I'm the only one in a wheelchair. All my friends who relate to me because of a disability live far away. I try to pretend that I don't care that I'm home all day taking online classes and getting lonely. It is easier to numb myself. The local people here that consider me a friend roll their eyes and keep score on how many times I bring it up. I wish there was someone here in town who understood and wanted to spend time with me besides my mom. I'm a very social person. To cope I write songs and read blogs. PS I would love to do a guest blog for you sometime Ellen.

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    1. Tuesona....
      "I try to pretend that I don't care that I'm home all day taking online classes and getting lonely. It is easier to numb myself." Are you, Friend, what I call a "mental drifter"? Such as myself? Translation. You may be struggling with some deep, strong emotional issues. However. Your mind drifts further and further away from whatever emotional issue you may be facing as some sort of "avoidance pattern". Because I can't but agree. It is easier to be a "mental drifter", fugitive from your own emotions. I feel for you. So much. Hang in there and stay strong!! ;)
      You write songs?! Cool!! I occasionally compose poetry and tried my hand at writing songs years ago. It was a failed attempt, I'm afraid!! ;)
      Love you later, Raelyn

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    2. Yea Raelyn seems like you know me so well wish there was a way for us to meet or be FB friends you seem so insightful.

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  5. I have often felt this way and it does hurt to be excluded even when you try to have play dates or set up mom's night out and people still don't come calling. One thing I have learned is that it is often easier to relate to people who have children with disabilities, at least for me. I find such a camaraderie with other mothers whose children have Down syndrome like my son and we are able to share things and gripe about things that annoy us (school, insurance, etc.) that other families who don't have children with special needs simply wouldn't get. That's not to say that I don't have friends outside of the disability community, because I have many. But I find the one I rely on more and more are the ones who simply "get it". And that is comforting!

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  6. It’s unfortunate that friends and even family sometimes distance themselves if somebody’s kid has special needs – but it isn’t necessarily so. The running joke in my family is that my train-obsessed engineer dad LOVES his train-obsessed, on the spectrum grandson K (aka my nephew / my only sister’s son) more than he ever loved me and my sister. It’s adorable. It’s also awesome, since Grandpa and K no longer attempt to drag me/my mom/my sister to look at trains. To be fair, K is pretty high functioning and easygoing (for a kid on the spectrum), my sister’s family is reasonable and it’s not too difficult to make plans in a way that K will be able to participate, e.g. sensory friendly cinema, early dinner to beat the tourist hoardes, etc.
    I think people get that the life of a parent with a SN kid can be hard(er) – but it’s also important to recognize that a SN kid doesn’t indefinitely absolve that kid’s family members from trying to hold up their end of a relationship. Many of the SN I know who insist they’re so very isolated are the ones who don’t return calls, reciprocate dinner invites, bail on carpool at the last second, don’t call to support a friend whose mom unexpectedly died and/or are forever demanding plans be altered to suit their kid… then cancelling at the very, very last minute. Five times in a row. They’re SN families who behave like this ALL THE TIME, not simply during an acute crisis – when, obviously, everybody’s absolved of holding up their end of the social contract.

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  7. Isolation is one of the hardest parts of being a special needs parent. I struggle deeply with disappointment and anger that we don't get more support from friends and family, especially with childcare.

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  8. I gravitate to moms who have to navigate health/school issues since they are more likely to relate even if they have a kid on the spectrum and I have a kid with health issues. And when I'm open about our issues but don't let it dominate a conversation, I find there are a lot of parents dealing with some form of very specific and isolating SN issue with one of their kids.

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  9. The online community has been my greatest support. Once things started happening with Sarah, friends that I had for many years slowly drifted away. I wish I could find more people in person that would just "get it".

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  10. I have the opposite problem. My daughter has a friend (B) with severe CP.. he is in an electric wheelchair (he can't drive it yet), and uses a speech device to talk. We have a standing play-date once a fortnight after school.
    We arrange B-friendly outings, and give him and my daughter both some input as to what we should do during our playdate. I can't bring my son, because I feel like she'd rather me not bring him. On the couple of times I've brought him with us, "couldn't he stay at creche a bit longer?"

    My daughter has Aspergers, and my son autism. I have bene made to feel that I can't bring my autistic son to her house, because of his behaviour. In saying that, when I've taken him (twice) he was very well-behaved but wouldn't sit still.
    Her having a son who always sits still because there is no other option, she seems to struggle to deal with my son who is always on the move and talks nonstop.

    It's not just regular parents that are hard to deal with. SN parents are just as bad sometimes.

    I work in disability, residential care. I work with suctioning, and PEG feeding, and bowel issues. I have offered to mind her son so she can have a break. She has never yet taken me up on it. She makes me feel like I should be dropping everything to make our fortnightly catchup, and makes a big deal when I can't. But when SHE gets a better offer and cancels, she doesn't think anything of it.

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  11. Ellen....
    Did you see the story about this mean "troll" who called a Beautifully Unique little boy with Down syndrome "ugly"? Then Mama Megan shot his comment down? ;)
    Love you later, Raelyn

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    1. YES! Her response was amazing.

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    2. Ellen....
      I am going to do a Blog post about this story {Lord willing!!} on my Blog tomorrow, if you would like to read it!! ;)
      http://raelynsendlesspossibilities.blogspot.com/
      Love you later, Raelyn

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  12. Like every other special needs parent, I have realized who my friends truly are. Some of my good friends don't call any more, but I still consider them my friends - I understand that they don't know what to say or do around us, and it's not that they don't love us.

    On the flip side, I have met some AMAZING people whose children have similar rare conditions as my daughter. Even though most of us have never met in person, they have become family. I love them, I care about them and their children, and I know they feel the same way about me and my daughter. This flip side isn't talked about that much, and it's important. Maybe that can be another blog topic for you.

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  13. Over the last 38+ years, I have found it helpful from time to time to see a therapist as I deal with difficult people and situations about my daughter with CP who is in a wheelchair, deaf and developmentally disabled. You need to keep in mind that therapists are like friends--some are better than others when it comes to meeting your needs. With a therapist, if at any time you believe your interests are not being heard or understood, get a different therapist. I did not go to therapy to understand my family or friends feelings better and learn how to respond to their needs. One therapist began our first meeting by saying: I do not want to hear about your daughter; we are here to talk about you--as if it were possible to separate us so easily. I have had a few really quality therapists who have helped me get through the ups and downs of my life. I refused to settle for less.

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  14. I play the flute. Naturally, I have to practice, get my instrument serviced, listen to flute music and perform in concerts. I got a "Superior" score for Solo and Ensemble, which is the highest. This is a metaphor for your lives.

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  15. So many of you have said it so well. We take our daughter everywhere (she has Down syndrome) and while it has opened up many conversations to meet new people many of friends especially my husbands lifelong friends have drifted away. I have 2 grown children and I know that life changes and sometimes that means friends too. We take different paths along the way. While I too, often become lonely I take refuge that we are blessed in this day and age to be able to use social media to have a life outside of our own 4 walls.

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Thanks for sharing!