real

*

That inner voice has both gentleness and clarity. So to get to authenticity, you really keep going down to the bone, to the honesty, and the inevitability of something.

~ Meredith Monk

.

Tuesday night

My friend sits on my bed, sipping her Skinny Girl Margarita. Luau is downstairs, hosting his Tuesday night card game with the boys. The television is on, paused in the middle of the previous night’s Colbert Report. Stephen is suspended mid-sentence.

We are determined to stay up until the Daily Show to see Jon Stewart’s take on the ridiculousness that has recently dominated the twenty-four hour news cycle – from Weiner’s new found certitude regarding what turned out to indeed be his weiner to Sarah Palin’s defense of her revision of our nation’s revolutionary history.

They are stories that don’t belong on network news; they are far more appropriate for comedians than anchormen. We are dying to see what Jonny has in store.

But we can’t seem to get through more than a minute and a half without hitting pause.

We’re talking about turtling. Regrouping. Dropping out of the social cycle.

“I have found recently,” I tell her, “that I’m really kinda lonely.”

I let the words hang for a moment.

“It’s just that well, we used to be really social people, ya know?”

She nods.

“We used to have friends close by. Up the street, around the corner, at the end of the block. The kids could walk back and forth. We hung out as couples, as families, one on one. We just don’t anymore.”

I don’t even mention the parties and the fundraisers, the big events, the dressing up, the constant flow of people through the house.

Gone.

“I miss the ease of it.”

As I say it, I remember that it wasn’t always easy.

“But I’m just not there. I don’t enjoy the time spent anymore. It feels like work. It’s exhausting. I just feel like I’m in such a different place.”

My friend is nodding eagerly. She gets it.

“I suddenly realized that I had completely pulled back. Luau and I used to go out with other couples nearly every weekend. And then I just didn’t want to anymore. It’s been ages. And as much as it’s been my choice, I’m really kinda lonely on the other side of it.”

“This life changes you, Jess.”

This life is one we share. Her two boys are both on the spectrum.

“You have no patience for the surface anymore. And as much as we may love them, it takes work to be around people who don’t speak our language. There’s a sense of being one step removed. It just doesn’t feel real.”

REAL

I let the word roll around in my head.

She’s right. I simply have no energy left for pretense. This life demands authenticity. It’s not just Brooke. It’s all of us.

Family rule – no bullsh-t allowed.

Katie told me one day that she had done a little test at school to see who her real friends were.

“It was no big deal, Mama,” she said. “I just asked them one question – if I shaved my head tomorrow, would you still sit with me at lunch?”

I marveled at my daughter. In the language of fourth grade, she’d found a way to get at what matters to her.

Can you handle difference?

Do you run from vulnerability?

Would you stick around if it wasn’t ‘cool’ to be my friend?

Are.

You.

Real?

She needed to know. In fourth grade, she demands authenticity from her friends.

When she told me that two of five had told her that they probably wouldn’t sit with her at lunch anymore, she shrugged and said, “Hey, at least they’re honest about who they really are.”

For a moment, I’m torn. As grateful as I am that the pretense is gone, I sometimes miss the ease of life lived on the surface.

But it was never real.

60 thoughts on “real

  1. I so get this as well. I used to be a social person, traveling from one place to another and staying out all hours until I adopted my children and found life exceptionally difficult with a child on the spectrum with other added special needs as well. I have no tolerance for surface people, for complaints that are so petty and trivial. I get annoyed with myself because the complaints are real to those people and genuine, but I am past all that and I find myself having a hard time sympathizing. I know no one else in my state with children like mine. The only people I know are out of state or in cyber space. It is a lonely path.

    • love what you wrote. ‘i get annoyed with myself because the complaints are real to those people”…i’m there with ya. i just can’t relate anymore and i miss that.

  2. Beautifully put, and so true – I don’t think we realize it until it’s laid out before us like this post does. The person I am B.A. (before autism) is so different than the person I am A.A. I let more things go because they don’t matter. But there is a massive, massive wall that wasn’t there before. The dear, authentic people scramble over it to come inside, and even if they don’t love what they find (which, if we’re honest, it has its uniquely wonderful moments), they at least strive to get it and support you in it.

    A relative recently told me that I wasn’t doing my job as a mother. I cried for hours, but then realized: guess what? She’s a moron. She doesn’t get it. That degree of removal ain’t a bad thing. Some people don’t deserve admittance into the castle.

  3. How is it that you can articulate words, thoughts, feelings that I was aware I had, yet never shared? DOAM, one love sweetie, one love:)

  4. I’m right there with you. My heart aches from being so alone. But truth be told, I’m a crappy friend. Tired, stressed, busy.. I feel so disconnected from the “real” world. I miss the days of backyard parties and bunco and book club… And having moved here not knowing anyone and with no family, I feel like I have to work even harder.

    Thank God for social networking or I would be completely isolated. But that feels sort of pathetic to me. I need a friend to sit on my bed and drink a skinny Margarita and laugh at Jon Stewart. But to have a friend like that I need to BE a friend like that, which feels impossible right now.

    Autism is just too big. It’s kicking my ass.. 😦 in so many ways. I’m not the girl I used to be.

    • This sounds bizarre but you are not alone in your isolation. Autism just sucks, there is no way around it. None of us are the girls we used to be. We share this reality as Jess was talking about. Although every moment of the day is complex, it seems that it is also simple. Autism sucks – but through this journey (which sucks), I have become a much more patient and real person. It humbles you as you know and makes you appreciate the little things that go smoothly because it doesn’t happen often. You are not pathetic,, you are where we are. You sound like a delightful person and I am sure you will soon find that friend,,, I live in ct… anywhere near you? I hope your day gets better – don’t forget to just breathe from time to time.

    • I do have a handful of old friends who are willing to make the trek out here. But, just as you said, I’m the one who isn’t capable of being a friend to them. Autism is kicking my ass, too, hun. :/

  5. Came across this fridge note from a parent and had to share. I totally relate to your post today. I think many parents of special needs kids find themselves lonely – a lot. I know I do.

    11 Things I have Learned from Raising a Child with Autism
    By – Laura Shumaker

    1. There is no such thing as a “weirdo”. People that seem weird have challenges that are hard to understand.
    2. There is nothing more valuable in this world than a well trained and compassionate teacher.
    3. Everyone you meet has a story of their own.
    4. Humor helps. A lot.
    5. Yelling is bad. It always makes things worse.
    6. The house doesn’t always have to be clean and neat.
    7. There is a fine line between patience and anger.
    8. It’s important to be flexible.
    9. Kindness and praise can diffuse a difficult situation magically.
    10. People who seem different are probably very lonely.
    11. There are more nice people in the world than there are not so nice people.

    • I am right there. God bless. Did anyone see the segment on The Today Show this morning about the mom who truly dislikes her child? It made me cry for that child. The mom needs to grow up and quit being so selfish.

      • Firstly thanks Jess for saying what Ive been thinking but couldnt put into words as well as only you can.

        Kellyr – ugh I read the article she wrote the other day and it horrified me. I wonder what would have become of her poor child had she not been “fixed” by hormones, unfortunatley the magazine did a great injustice to all us SN mammas out there who love unconditionally even though this journey is SOOOO hard, and will never get a magic “fix” pill for our kids.

  6. It’s just all so exhausting….. you really hit the nail on the head…. AGAIN!! Realness matters – and that’s a job finding that in itself~!

  7. Ah, Jess… Once again, you have completely hit the nail on the head. Husband and I were just discussing dismal state of family social life. And you know? It’s just so hard, no easy hang out & flow. But at least its real.

  8. I miss it too…I realized the other day that outside of our family, I may talk with Korin the check out lady at the grocery store more than anybody else…sad really, considering it’s the same 30-60 second conversation every time.

  9. Timely post.
    I just realized this past weekend that I need to create a special needs community around here. Not just for my kids but for me and other parents. As much as I love the online community I only have time for a peripheral role and I miss miss miss real people that I can relate to and share with and get together with. A group of people where our kids are not special needs kids, but just kids. Integration is a great principle but I always wonder what it must feel like to be the kid that is always having a hard time? Must feel like being the special needs parent in a group of typical parents.

  10. Once again, you have hit the nail square on the head….There was a time when my house was always full of friends hanging out, it was the hub of our social life when we were active duty, Before Autism. fast forward, 12 years, and its a completely different picture. Social networking helps me cling to the handful of real friends I have , scattered all over thanks to Military Life, but to get out now and make new friends? too much work, too scary….I stay exhausted, stressed out, overwhelmed, who wants to be friends with me when I am like that? I feel alone…..

  11. Lonely indeed. I have had such a hard time relating to even my closest of friends. Since they are scattered throughout our great Earth, they don’t see the every day, so when we do get together I feel like I’m teaching them so that they can support me. It doesn’t feel natural, and it doesn’t feel good. It is tiring. I’ve had the hardest time since I’ve moved back home. Some of my friends are here and I adore them. But I haven’t had the heart to really, truly explain how the scattered, high-strung, yet simultaneously laid-back, artsy presence of theirs (which I adore mind you) impacts their own children in ways that make it next to impossible to not feel winded and dizzy when she and her children share space with us. I desperately need the friend time, but my little Jonas cannot process the energy that is conjured in her children’s presence. I guess you make new friends, different friends, but I haven’t. I feel so darned anti-social. I’m a collector of good friends, not acquaintances, so it makes it really hard. *exhale* I so get this post. Thank you for sharing, Jess.

  12. I wish I could say this gets easier with time. We strive and advocate for full access and inclusion in all parts of our children’s lives and the exhaustion from that effort translates into needing home to be a safe haven from that work; before we know it, it turns into a crippling isolation. And how included are we in the grand scheme of things if our homes are the biggest sources of isolation in our lives? We slowly began to open up our home again… and the empowerment in that is – our home, our rules. There is no room for the random nastiness we tolerate in the outside world. If you are invited into this house, tolerance for our lives is expected. Authentic people only. Surface types don’t pass the threshold. The traffic is less than it used to be, but I realize it’s more real than it ever was. But I also miss the comparative ease of the surface life, just the same. As always, you resonate.

  13. I’ve never been very good at the superficial — so, I have always felt a little out of the social strata. My daughter’s autism has enhanced this sense of isolation. It’s one of the reasons I love your blog, Jess, and the fundamental reason I write my own: I need that sense of connection with the rest of the world. I need “them” — the neurotypical families and friends — to understand who/what our family is.

  14. Just last night I asked my husband if it would make us bad parents if we brought our 3 yr old with autism with us to watch a PG13 movie. That’s what our social life has come to. There’s just no-one near us that I would feel comfortable leaving my little guy with. It just seems like it would be asking too much. He takes more work than the avg kid and I don’t know too many people who can handle it. Hang in there. I’m sure the pendulum will swing the other way again and you’ll be feeling better soon.

  15. Wow. Even though in my case autism has nothing to do with it, I feel that you have identified exactly why I’ve always struggled socially: I have no patience for inauthenticity. I’m grateful to you for this new insight into my own life. Real people are out there. It takes a little longer to find and become friends with them, but you will.

  16. Wow everything here is sooo true. Myself I used to be a “social butterfly” and now that I have a child on the spectrum, everything slowly just stopped. I don’t really have the friends that call me anymore to hang out, (except for one of my friends with a son on the spectrum as well) We don’t really go awhole lot of anywhere. Wal-mart and home see to be the 2 places we revolve around (besides Dr. appts) I just wish people on the other side could understand, and maybe its because they DO understand, that this is hard, sometimes depressing, sometimes overly frustrating, job. I say job b/c its “outta the norm” and my pay (from my employer aka my son) is amazing. I love him SOOO much. I would like to have more adult conversations, WITH ADULTS. But I totally understand this above! Its my life…

    • -NOTE: MOST OF MY COMMENT ARE DIRECTED AT OUTSIDERS NOT INTENDED AS PART OF MY REPLY TO YOU SHONDRA I’M NEW TO THIS AND GOT CARRIED AWAY SO FIRST PART IS FOR YOU-REST OF IT IS NOT REFLECTED FOR YOU SORRY IF I CONFUSED] Same here-I used to be a social butterfly but have never liked being the centre of things-my son’s autism and extreme behaviours causes me to always be in the centre and not always in a good way-I love my son sooooo much and I am disgusted that parents more so than children judge,say mean and or down right ignorant things and are so critical in the ways they view children that are not “perfecct,conforming walking robots” as I put it.If more parents and people in general would stop trying to be so perfect and teaching children it’s ok to pick on other’s or treat other’s differently etc.. then we as parents of speccial needs cchildren would/ould relax more and fous on our cchildren in need especcially when in meltdown mode instead of having to argue and or tell other’s to back off and leave us alone-when child in screaming hitting kicking fits in public other’s always want to add they’re 2 cents,advice etc.. and I will not abuse-hit smack my child just because you grew up getting hit and such and now think it did you some good-news flash it didn’t or you wouldn’t be hitting your children etc.. Children need/want should grow up feeling all the love support tender care that we want-we don’t want to be hit ignored etc.. Anyways if socciety was more tollerant we wouldn’t be trying to fix our special needs children or being embarrassed and or stressed out when having to go outside our homes.There I’ve said my piece probably in the wrong place as was replying to another parents comments but got carried away-this was/is intended for other’s not dealing with special needs. Shondra I relate with you and would love to connect-please cconcider-either way thinking of you and wishing your family well-from a mom who gets it-hugz

  17. Well Jess you did it once again…. I havent been on ur page in a while cuz when I read it it forces me 2 deal with whats going on in my own life… But I have been having a hard time lately so i went 2 ur page 2 read welcome 2 the club 2 remind myself that ill be ok…. Then i seen this and all i can say is thank u…. so many tears….

  18. After my son’s diagnosis, I too, made a choice. I walked away from circles of relationships….many chose to walk away from me. My new email contains the acronym R.E.A.L.. It stands for Respect, Empathy, Awareness and Loyalty. I provide my friends with these four things and expect nothing less in return.
    realjmac@

    • @Julie… love this. 🙂 Thanks for sharing your acronym. Very cool. Trust has begun to be a big thing for us… trust that I do the best I can, that I’m doing the right things… and to ease up with the suggestions, y’know?

  19. amen, chica. i’m so bad at small talk now. every topic turns into a mission statement somehow. i don’t like my social self anymore, heh. i barely even remember her. but i remember enough to miss her. good post!

  20. I am a single mum in Australia of 3 Aspies – 15, 11 & 9. I have lost my drivers licence. Apart from the struggle of getting transport form mkids to school each day I also just have to be here all day alone….it is also difficult to get to the supermarket to do my mweekly shop on my Carers pension

  21. So get what you’re saying here! My two kiddos have autism (on the more severe end) and we are in the middle of a major move. That’s why the friends that we have are like family to us. We need them so much!!! I need them because just like me, they all have kids on the spectrum. My husband and I really have a hard time being around anyone who doesn’t at this point. It just doesn’t feel real enough for us. Whenever we go to a party with those other parents, it just feels like we are floating out there on the surface. It’s almost painful and very isolating for us. Great post and really honest! Thanks, I needed to read that.

  22. Wow, after reading these posts I realize that I am not the only one with an child who has austism dealing with isolation. Thank goodness for the web where I at socialize a bit electronically. Love my child, but it is a lonely place for a single mom.

  23. Wow, after reading these posts I realize that I am not the only one with an child who has autism dealing with isolation. Thank goodness for the web where I at socialize a bit electronically. Love my child, but it is a lonely place for a single mom.

  24. Wow! And I thought it was maybe because I was mildly autistic in a way to or my epilepsy made me see life differently. Maybe not. My sister is severely autistic, and from her I have learned a completely different way of looking at things, a way most people don’t understand. I don’t try to be social anymore. Like you said, it is too much work with too little reward. I usually end up more lonely in church with a crowd of people than at home by myself. I have no regrets thought. At least I know where I stand and what is important, and I’ve learned that a social life just isn’t that important anymore.

  25. I understand…I am consider in my circle of friends the “strong” one…But when I am having rough times. I really don’t have a friend I can console in. So, I keep all my frustrations, even my joys sometimes inside because I don’t want to hear the “Oh, I think he’ll be okay” Or “Why don’t you don’t you do this?” from my friends who aren’t going through or even trying to be compassionate about my struggles. I just want someone to listen. I am exhausted trying to balance everything on my own.

  26. this really hit home with me, i had this great plan of going back to work when my kids hit grade school. But that has now hit and there is no way i can. but when you tell anyone this that doesn’t have a child on the spectrum. they look at you like your crazy or something. it can feel really lonely

  27. Oh my god I get this. Before the diagnosis we lost friends as they thought we were bad parents, during the diagnosis we withdrew to deal with the stress and lost friends, after the diagnosis we lost friends as we weren’t perfect enough.

    Now? I don’t want to make friends. I don’t care about the competitiveness of reading levels and test results. I can’t stand and make chit chat whilst they judge me and my son.

    Whoever has commented and said that their true friends are their family, EXACTLY! Those few that I have are absolute stars and I love them dearly. I used to be such a happy bubbly sociable person. Now I find myself disliking the company of others.

  28. i feel the same some times just alone, my autistic child is non verbal and is 19yrs old, even when shes home from school i feel as if i talking to my self, she understands some things but cannot rrelay back to me her point of the issue, i am thankful that my husband of 25 yrs is great with her and show no sighs of leaving me single with her, i do have the help of my mom she picks her up some weekends and days out of school, and her school is a exceptional student center she normally would graduate this year but there they stay till21, but then what , i pray by then there is an oppening in a group home for the autistic spectrum ,my husband and i are in our 50s we want to make sure she is cared for and some place safe for her when we are gone, she does have 2 older sisters but they have their lives they could not be 100 % there for her . thank you for letting me comment

  29. For me, it seems to be the opposite in some ways. I don’t miss the social butterfly in me. I’m done with partying and fake friends too. I only need/want the real in my life. But I don’t feel lonely at all. Quite the opposite. Thee have been many other life altering changes for me in the past 18 months besides Autism. Maybe that’s why. For the first time in a long time I feel free to be me. That “me” has changed dramatically through my daughter’s diagnosis, but I love who I am now. I’ve never felt more at peace with myself, or more at home with my life. Yes, Autism sucks. But the rewards are also 10 fold when they happen. I feel through this path which was chosen for u, I have found my true friends and family. Those that really matter have stepped up and stayed around. Those that didn’t are gone, and good riddance. I’ve made some AMAZING and wonderful friends whom I never would have met if it weren’t for Autism. They’ve become like family. Though there are days that are really really hard, and nights I cry myself to sleep…There are also days of pure joy and pride at how far she’s come in such a short time. And though my life is at times chaotic, hard, and anything but typical…I am in a really good place with ME. I am happy with my life as it is now. I am thankful and blessed to have come from where I was, to where I am now. I wouldn’t trade it for the “old” days or the “old” me.

    • I posted a long post below by Kathleen Ramstrom and I am right with you = I believe my son has taught me so much – that it’s awesome now – true friends stayed those who were not left – I feel that matthew taught me how to relax – how to be normal – and I thank him for that every day – fyi he was home from school for 4 months – that was different we needed an IEP he is 8 years old and was just diagnosed in March – it’s been a long journey we have learned so much – it’s all fine right now – patience paid off –

  30. Wow. Would you believe that I’m jealous that your husband is hosting a card game and you have a friend over watching Jon Stewart? ;o)

    I’ve always been an introvert. We moved cross country away from family and the world got even smaller. My son is 12 and high functioning now, it wasn’t always that way. My daughter is 10 and nuerotypical though she’s also in special ed for the gifted program. For her sake I’ve had to break out of my shyness and interact. The positive note is, while we don’t have what I would call true friends here, the folks (adults and kids) are so kind to my son when they see him.

  31. I totaly understand everyone with thier comments as My husband and i have got two children on the spectrum,one boy 17 and one girl 11 sometimes we feel really isolated even thouugh your family think they understand you dont unless you have children of your own on the spectrum i just keep saying to myself keep smiling even though you feel like sobbing your heart out but i wouldnt have it any other waty our children have taught us alot over the years xxx

  32. Jess – wow, like so many, I can relate. In some ways, I feel like I need to work on my “social skills” as much as my kids do! Autism has lead to a loss of many friendships – but in many cases, it was me that didn’t tend to them out of neglect. In the beginning could not deal being around “typical” families – just too painful. Now, it feels more like being on the outside looking in. Hey – at least we all have each other – thanks for articulating so perfectly what many of us feel!

  33. I am alone too. I was social as well -and married when my husband walked out when my son was 4 years old. I love coparenting now – it gives me the break I need. I also choose to isolate myself and I am lucky enough to be able to …..Matthew loves being alone – he adores his nest aka tv in his bedroom……and building legos and he loves me being right here by his side. Matthew was 8 when he was diagnosed officiallly – that was just a few months ago.He decided school was too hard and that if i left his side I would die and therefore he could not exist……5 months home – changed schools now have IEP…..but it’s ironic – I think my son taught me something important in this journey – that relaxing and being calm and non social has it’s benefits too – most people would love my lifestyle – I pressured matthew to be normal – you know tried to be spontaneous – I went back to work this year – I placed him in afterschool program – I ran my life as most mothers do – but I always knew it was going to collapse and it did – mid january our life changed in NY minute…..I have not worked since – I have been home – I had to get the diagnosis and I thought it was mental illness not Autism – the schools told me not to bring him back until he had medication – they even suggested I admit him to a psych ward – those were such dark days – I lost my son – he was gone for 5 months – until we got what he needed therapy, medications, the right school, an IEP it was a long stressful journey and it was alone – friends don’t come as often – matthew doesnt engage and when he does he can be a behavior disaster – but along the way I gained acceptance = in a peaceful kind of existential way – that my son brings me joy that most people have not – in all his mannerisms and defiance and indifference he taught me alot about me – he taught me to slow down – to be ok alone – that simplicity is key to a balanced life…..in the end I am glad that I don’t have to blame myself anymore or make excuses for my son – I simply say he has autism and I prepare everyone for anysocial event I attend and what to expect – it’s second nature now. I am thankful I have the team from school, therapy, the co parent on board now not blaming me that I coddled too much – I am thankful I do have a number of friends who understand and get it – and thankful for those that did not that they are no longer part of my life or Matthews – the journey is long, the journey is hard -but it’s extremely rewarding – I feel blessed that I had so much support -so many people tried to help and came out of the woodwork….and I too am not a good friend either – I cry many tears over this new me – the acceptance over the denial my son is Autistic is a daily battle with me – I cry not because I am sad I cry because I sometimes just can’t believe how mean people have been and somestimes still are – it’s that human nature I fight to change – I always present positively with my son – always smile – always try and bring him out – sometimes I cant’ though -etiher I am just too tired or I am not willing to battle it out all day – I find just being alone with Matthew is a wonderful…..

    I had a friend (well many lol ) that said to me once before the diagnosis you coddle him …you let him get away with everything – he’s controlling you – and I took a deep breath – one of thousands I have taken and I said but Emily he’s telling us the truth – he’s telling us by his actions he can’t handle it – I can’t deny him that truth – of all people you should understand for it was you who told me when Matthew was 4….you said can we talk I said sure you said have you ever noticed matthew is different? That began a huge journey – so much denial and self doubt – and all I did was what I knew how to do – cope and love him in the way I knew he would accept and tolerate the best – it was not until now – when I can review the last 8 chapter years of Matthews life and my own that it was all right there – all of it – and in the end I lost a husband, a marriage and many friends – but I gained so much – I gained an amazing son who I can help now with the people who are willing to help him and I don’t have to furiously protect him anymore – it’s real now and it’s just fine – It’s been my life for 8 years – it’s ok – and actually Mattthew could not ask for a better mother to raise an autistic son because I have always allowed him to be who he is – I lost so much for that – I cry everyday as I am now -and not because of sadness but a mixed sense of joy and relief that finally, after all the years – I have an answer and I can sit here now and smile and say we weathered a pretty rough storm but now it’ s all going to be absolutely wonderful –

    In ending – I thank god for social networking – it got and still gets me through dark, long days – and I thank my son – he said Mom you can’t get married ever again and I said will you take care of me Matthew and he said oh yes Mom I sure will – and he paused and he smiled and he was so excited and he said and Mom I will even give you a $100 a week to live on – I hugged him and I smiled – you know what that is good enough for me 🙂

    • PS in the above message when I say I lost my son I mean I lost him as the son I had known before severe anxiety paralyzed his thoughts – he was always with me – my little tiny bee 🙂

  34. Jess…….I have felt Just this way about socializing for so Many years. In a way…we do exist on a different astral plain. Sometimes the socializing [which should be fun] becomes just another wearying obligation to contend with. When one is constantly dealing with such momentous issues; conversations of “typicals” can, at times, sound like so much petty nonsense. & I lose patience for it. Bottom line,……..for perspective & scale it remains Important to keep a foot in the outside world & the problems & concerns of others.

  35. Oh my. I echo your sentiments ad the sentiments of those who commented before me. I can;t tell you enough how your post came at the exact right time for me.

    I made a comment to my mom the other day that if I had to choose a best friend it would be my daughter. The daughter with ASD. Who’s 3. Because she’s the one I spend the most time with and loves me unconditionally. I can talk to her about things and she listens and doesn’t give her 2 cents in. She hugs me. She lets me cry. She does all the things that I want a friend to do for me.

    She doesn’t give her opinion on this therapy or that one. On this parenting method or that one. Or say, “She won’t be in the special school forever!” Or, “she’s doing soooo well she will be fine.” No. She won’t be. Autism is forever. It’s 24/7, not just the snippet you see. She doesn’t say, “you’ve changed” because I won’t be catty and make fun of people anymore. I’m not the same person I was. And my baby girl embraces me despite all that. I wish she could teach the world the same lesson.

    I don’t know what’s been going on in my social circle lately but whatever it is, I’m not there. Is it my fault? Partially – I have a tough schedule, Husband and I work full time, my hours are crazy to accommodate therapies and assessments, husband works 6 days a week for extra cash, and t’s just too hard to go out alone to some places with my daughter. She’s an excellent little girl and she rarely melts down, but, as I know you all can sympathize, a new place with an ASD child is a totally different experience then a new place with a typical child. I say no, I can’t make it. I can’t watch a room full of typical children doing typical children things and then watch my daughter spin around. It hurts. I have so much hurt and grief still to deal with on my own. I can’t watch.

    Then there are the times when I have a free moment, or it’s a place I feel comfortable going to with my girl, or what….I ask, I try to make plans. I try to have parties or bbqs and I’m met with excuses. Or drop outs at the last minute.

    And there I sit. Alone. Again.

    A “friend” can say over and over again how busy their life is, how they do care, how we will hang out soon, how they get how tough your life is, but look how great she is doing with therapies, etc. But after hearing “no” or getting the shaft on the rare times you DO have time…it makes a girl lonely. Very lonely. And angry. And disappointed. Am I not good enough to warrant friends? Autism doesn’t ever go away. Friends do.

    Whether they admit it or not….I’m playing on a completely separate field, in a completely separate game, on a completely separate continent. Facebook and emails only go so far. They don’t spend a sunny afternoon giving you a break from the 24/7 ticker tape of Autism that runs in your brain. Facebook doesn’t come get ice cream with you on a fall evening when you just want to try (even though that’s easier said then done). I can’t help but erect a wall inside to keep people out, because I can’t keep getting my hopes up that they will physically be there when I need it so badly, only to have them crushed when it’s “no big deal” to back out at the last minute, a minute that, like every rare free minute I get, is rare.

    I guess I’ll keep playing my game. On my different field. On my different continent. Alone. At least I have my daughter.

    Jess, and all the previous commenters, thank you for your thoughts…they give validation to my feelings, and I need that.

  36. “You have no patience for the surface anymore. And as much as we may love them, it takes work to be around people who don’t speak the language. There’s a sense of being one step removed. It’s hard. It just doesn’t feel real.”

    REAL

    I let the word roll around in my head.

    “I simply have no energy left for pretense. Life here in the land of autism has forced authenticity upon our family.”

    These words touched me. I have thought about them repeatedly. I have come back to this and read it 4 times today. I get it. My son has Autism. I. Get. It.

    I

    Am

    Real

  37. It’s as if you’re reading my mind this week… I’ve been there off and on over the years. I always come to the point where I’m not sure if I’m more sad that we no longer socialize much, or if I’m more sad that I don’t have the energy to care. I think about my pre-child, DC days a lot, and that seems to help. Here’s wishing you peace with this, either way.

  38. Pingback: Top Posts — WordPress.com

  39. The bravest girl I know is battling a relapse of one of the most aggressive cancers out there. And you know what her twin sister (12) did? She shaved her head in solidarity. Kids like Kate and Ari amaze me. They are so much stronger than I ever imagined I could be.

  40. Exactly. Home run. Amazing, reading my guts on the screen when it’s not me. About not having patience for the surface… I have considered rather seriously dying my hair blue… or at least getting highlights. Just for Ryan. As different as we feel on the inside, why not make it match? Cut the crap, you know? Love that Katie. God has big plans for both of your girls, Jess. BIG. PLANS.

  41. DItto. When I try not to talk or think about our lives it comes full circle. But the only other people who get you are other Mom’s who have Autie kids. Then again you don’t necessarily want to talk about your issues with them because they may have worse or less issues than you and then well you suck either way. Then sometimes you just don’t want to fucking talk about it. You are drained and you really want to talk about how much is the pedicure at the spa is, and how the hell do I loose the weight when my kid is escaping from the daycare at the gym and I can’t complete a class. Oh wait see it went right back to having a kid with Autism.

  42. There was a time, not so long ago, that we were hardly ever at home. We would visit friends every weekend, and sometimes during the week, too. We had a good reliable babysitter at the end of the road, so we could have couple’s nights out as well as family ones.
    Then my husband got a new job, and we moved to the middle of nowhere. We still visited friends for a while and they visited us, but slowly (with hubby working most weekends and no babysitter nearby) we just stopped doing the things we used to.
    And then no 1 son eventually gets an autistic spectrum diagnosis, and the fact that we hardly ever see anyone really hits home.
    But like so many others, I can’t be doing with things/people/situations that aren’t REAL, I just don’t have time for it. And also echoing previous comments, without social networking I’d have gone mad a long, long time ago.
    It is reassuring to know there are others in the same boat, that I am not on my own in feeling completely alone.

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