Dear Friend Whom I Haven’t Seen Much Of Lately

Dear Friend,

You have no doubt noticed that you haven’t seen much of me lately.  Maybe weeks, maybe months, maybe years.   I bump into you in the grocery store, and we always talk about getting together soon and about how ridiculously long it has been.  And it really has been too long.  I really have wanted to see you.  But I will admit that sometimes when you call, I don’t answer the phone.  Often it is because I can’t talk amidst a cacophony of banging, screeching, and crying.  Mostly it is because I have been standing there for some time trying to figure out just what it is that my child wants so badly, but doesn’t have the words to ask.  He’s upset, and there will be no conversation if I don’t figure it out.  I intend to call back, but because he has so much trouble going to sleep and staying asleep, I often just give up and hope for another opportunity.

But sometimes I don’t answer for no reason at all.  Yes, I swear I’m eating, brushing my teeth, and taking showers.  Don’t worry — I’m not that far gone.  I simply find it overwhelming at times to even think about making casual conversation.  There is so much to catch up on, and I don’t have the energy for that.  So, please believe me when I tell you —It’s me, not you.

But you probably already knew that.  I’ve heard the other end of the phone go quiet and then realize that I have been talking for a long time about my child.  It’s often the end of our time together when I realize that he has been the sole topic of conversation.  I don’t mean to do it.  I’m simply overwhelmed and leaning on you in the same way I used to about other sorts of things.  Except that worries about him are now a broken record in my mind.  I forget to ask you about your kitchen renovation, your vacation, what is going on with your sister-in-law, or your promotion.  And even when I do ask, I’m distracted and don’t seem to have the capacity for all the details.  I really do care about you and your life.  It is simply that there is only so much room in the active part of my mind, and right now it is taken up with him, his needs, and his myriad of  therapy sessions each week.

You are still the great, caring person you always were.  And I know that you mean well when you ask me to “bring the kids” to some get-together you are having.  I know that your feelings will get hurt when I inevitably decline.  But, you see, when everyone else is sitting back and laughing — watching their kids play in the pool — I am running around trying to make certain that my curious little tester of bouncing properties isn’t destroying your home.  You have a lot more knickknacks and breakables than me these days.  I’m trying to make certain that he is fed, because he won’t eat any of the child-friendly foods you so kindly have served.  And, because you don’t have a fence or child-proof lock on the exterior doors or safety gate on your stairs, I can’t spend any time with you while there anyway.  It becomes a stressful experience that I avoid like the plague.  And, even if I do get a sitter and come without the kids?  I spend my time feeling guilty about not bringing them.

So, that’s where I am right now.  And why I haven’t been calling.  I really would like to have lunch with you.  So, yes, please ask.  But I’ll need you to do me a favor.  Please give me several days’ notice.  Because I don’t want to bring the kids, and I need to make arrangements.  Please pick an affordable restaurant.  Because all these therapies, treatments, and special diets are costly.  Please let me go on a little while about my child.  Because it explains so much about the Me of Now.

And then be sure to sweetly say, “Now let’s talk about ME” and proceed to do so.  I can take it, really.  Sometimes, I just need to be reminded.  :)

If you liked this post, you might also enjoy:

“Love Life, Be Brave.”

Speak No Evil:  8 Things Family, Friends, and Complete Strangers Shouldn’t Say to Parents of Autistic Kids”.

69 thoughts on “Dear Friend Whom I Haven’t Seen Much Of Lately

  1. Mary

    Thank you! I wish my friends would read this!!! Truly sometimes I fear “outings” or birthday parties my son attends as I appear so high strung chasing after him ALL the time.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Isn’t that the TRUTH? It is exhausting running around after these little boogers! (Even without ASD, almost 3 year-olds are tornados!) But he is so much more…vulnerable than same-age children. He gets hurt more easily, and he is now becoming more intolerant of unfamiliar situations. Going places simply isn’t fun. I honestly wish that friends would come to me more. Since my son is happy at home, it is a great opportunity to meet the REAL Callum – the little boy inside that people don’t see when he is caught up in sensory overload. :)

    1. charity

      I’m new to your blog…but I truly appreciate the way you express yourself and usually what I would want to say also!!! I have a daughter with Rett syndrome so we add a wheelchair to this scenario, but…well, you know!
      I just wanted to thank you for putting into words, so eloquently, what I feel. I’m feeling that kinship that comes when you meet people who just “get it”.

  2. Tammy S

    My friends and family tell me “you need to relax”, ” you are so high strung”,or “you are too over-protective” and I try to explain that their world isn’t my world anymore. I have to look at the world in a different way now. I have to be on guard, always keeping an eye on my son (He is a ninja), and an eye on my other two sons, the entire time on the lookout for triggers to meltdowns, and situations where my son could hurt himself or others, All the while trying to accomplish whatever it is that was the purpose of the outting in the first place. There are few places that I can relax for even a few moments, on occassion a couple of family members homes, as long as it isn’t a “family gathering” and is just us visiting. Even then, my son is usually “set up” in a seperate room away from all the noise and confussion, with me checking in on him often. Even if I am in a conversation in the next room. my mind is half following it, half listening for him and any problems, wondering if he is getting into something he shouldn’t, constantly feeling the complusion to “check again”. And if it is a NEW place or experience, I am a huge ball of anxiety, unable to breathe comfortably from the moment we leave the front door until we walk back through it. That is when I am most in “super over-protective mommy mode”. Unfortunately for my other two sons, I tend to watch them as closely by default. I am unable to turn it off. It is something I am working on. Every day.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      You can’t NOT do it — at least when they are little. I’m sure it gets somewhat easier later on. At least I hope. But when a child won’t be corralled and involved with others, you will always be chasing after him.

      It can be hard. Thanks for sharing.

  3. ylewis

    Exactly. I love your blog! I have great friends, who I love dearly. However, so much time goes by between quality visits (partly because it’s so hard for me to get away) and so much life happens that I feel as if we are never caught up…which means I feel they don’t really know me anymore, especially since my (special needs) life is so different from theirs. I recently wrote a post with a similar tone about the holidays on the SPD Blogger Network. I’d love to hear your thoughts.
    http://www.spdbloggernetwork.com/2011/12/09/life-outside-of-the-bubble/

      1. ylewis

        Thank you, Leigh. I appreciate you taking the time to read it and comment on it. And thank you for consistently putting into words on your blog the emotions and experiences we all share as parents of very special children!

  4. Terri

    This was *so* my life when my son was young. I used to get comments like, “You can’t protect him from everything,” and “He’s got to live in the real world someday.” My response was always the same: I have to predict and prevent/avoid as much as I can to level the playing field for him while *at the same time* teaching him the skills he needs in order to succeed. I will not dump him in the middle of a situation that requires skills that he doesn’t have and expect him to suddenly have them, or to learn them by failing.

    My son is 14 now and has learned quite a few coping and social skills. I don’t have to go through the same level of preparation that I did for years. Though it’s still not easy, it is easier.

    1. jokerssoul

      Terri,

      You said:

      “I have to predict and prevent/avoid as much as I can to level the playing field for him while *at the same time* teaching him the skills he needs in order to succeed. I will not dump him in the middle of a situation that requires skills that he doesn’t have and expect him to suddenly have them, or to learn them by failing.”

      Holy MOLY… I wish more parents (even those with average kids) would realize this!! There are teachable moments and moments that you just have to do what you have to do! You can’t expect a kid in full meltdown mode to learn ANYTHING.

      You are so spot on! Great response to a fantastic blog!!

      1. Profile photo of FlappinessIsFlappinessIs Post author

        Jokerssoul, that’s a great point. We do have to make sound judgments, and not just for special-needs kids. My four year old NT daughter is a handful all her own!

    2. Profile photo of FlappinessIsFlappinessIs Post author

      Terri, you have just given me hope! Thank you.

      And I’m hearing a lot of the same these days. It may be true, but sometimes you just need a break from everything being difficult.

  5. Jenna

    Your post at the end made me cry a little. It is so hard to explain to our friends why we just can’t be there like we used to. All those little fears of being in a new environment. Everything you said. Now that my son is older I find it is even harder because I have become awful of giving my son different standards then other kids his age because…. (fill in the blank, he might be dying, I don’t want to fight with him, he doesn’t understand, there are so many ways to end that sentence.)
    I also wanted to add, you mentioned your son not sleeping. Between the ages of 1 and 2 my son slept less than 4 hours of interrupted sleep a night. That was even with melatonin. We tried clonodine and it had the reverse effect. I finally got my doctor to do a sleep study and my son had sleep apnea. We got his adenoids taken out and the sleep got a little better between 2 and 3, about 6 to 8 hours of interrupted sleep. We did another sleep study and he has really bad acid reflux. We also found out he has abnormal brain activity that keeps him from sleeping. Another year later, more meds he started sleeping a little better. Still interrupted but there is sleep that happens. (right now he is only have 1% REM through out the night) but I am getting to sleep now.
    I know this was long, but I wanted you to know that if you haven’t done so already push for a sleep study, maybe even a sleep study with an EEG. You never know what is going on.
    Yes, a sleep study is very difficult for our kids and very hard on us, but hopefully you can find something out to make it worth it.

  6. Rachel Cotton

    JUst love this, thanks for writing. Been meaning to write an email to lots of friends for the last year or so…. you’ve said it much better than I can, I will be sharing this link instead, thanks.

  7. Steph

    Brilliant post again. You write so well. I can feel a book of letters coming on :-)
    you just hit the nail on the head with this – the difference is that most ‘NT’ mums will not have had these thoughts go through their heads ever, and to be fair, how can they when they don’t know what it’s like to live life ‘on the edge’ all the time. It is very isolating when you realise that other people don’t and can’t understand, but it brings so much relief to find others who do – the virtual online special needs community has been a lifesaver for me. Thanks.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      You know, it wasn’t until reading this that it even occurred to me that I have a tendency to write in an open letter format. Funny how one doesn’t analyze one’s own writing. I actually have the start of three other letters in my drafts! lol Sneak Peek: one to my son, one to his sister, and one to my NT students.

      You’re right about the virtual online community being a godsend. I’m amazed at the connections I’ve made in the past 2 1/2 weeks since starting this blog. There are truly wonderful people out there… :)

  8. karenaspergersmom

    Such perfect words for so many of us. I would only have to change a couple of things to say the exact same thing. I have to try really hard not do dominate the conversation with my broken record of frustrations, worries and concerns about my boys. I’m going to share this on my Facebook wall and hope that some of my friends will read it.

    1. Joan

      I did read this on Karen’s Facebook wall – and I’m so glad she shared. Added to this situation is that we’re still “early” in this process – and we have so many friends and family members who either don’t know at all yet about our daughter’s recent diagnoses of Asperger’s and sensory processing disorder, or who “know” in name but don’t understand a thing. It’s so painful to watch well-meaning friends trying to “pick apart” my wonderful preteen girl and say, “Oh, is she doing that because of her xyxyxyx?” She’s doing THAT – whatever that is – because she is her, a wonderful person who I love dearly, and that’s all there is to it.

      Then you add in that I’m still going through the part where I’m sad for what isn’t, so for right now – and I know this will change – I can’t listen for one more minute to your story about your 11-year-old gymnastics star or academic prodigy or future doctor whatever it is that you’re so proud of, because all I want to do is cry. I’m changing – thanks to a LOT of prayer and a lot of support – but I’m in an adjustment period and I need a little while not to be reminded of all the things that AREN’T so that I can find my joy in the great things we do have as a family.

      1. Lorelle

        Hi Joan, yep we have a now 17yr old aspie girl and boy oh boy was it a struggle when she was younger. She was only diagnosed after a misdiaganosis of ODD, and Depression. We do think she suffered with the depression, but I also think that was because of the enormous stresses from the aspergers. We had some very well meaning and sometimes outspoken friends that tried to tell us to buckle down on her and more disapline is required. We knew better than that, and we could not understand why at home she was a perfect angel. Now we know why and now we go head on in any situation and defend and educate her so that she never again feels that she is not worthy of being a star with all her abilities and achievements. Our daughter wrote a blog in the “aspect” magazine that was published in nov 2010 explaining to all that know her why she does what she does and who she really is. This has been the turning point for our family as it explained to outsiders that it has nothing to do with parenting or bad attitude, it is just a part of who she is, and with love and support she can do anything. She is a very successfull member of her social group and her family and local community. We are very proud of her “Abilities”, and pay no attention to her “disabilities”. With education and love I am sure your daughter and yourself can learn to feel good about the diagnosis and use it to your advantage, just like we did. Positive things come from positive thoughts… :=}

      2. Profile photo of FlappinessIsFlappinessIs Post author

        I know exactly what you mean. My nephew is only 5 weeks older than our son, and it is hard to watch him develop normally. His parents are wonderful and love our son and don’t brag obnoxiously, but it is still hard to to see what my baby is missing out on.

  9. ariel

    This part is what spoke to me the most ” I forget to ask you about your kitchen renovation, your vacation, what is going on with your sister-in-law, or your promotion. And even when I do ask, I’m distracted and don’t seem to have the capacity for all the details. I really do care about you and your life. It is simply that there is only so much room in the active part of my mind, and right now it is taken up with him, his needs, and his myriad of therapy sessions each week.”

  10. AspieSide

    So very true! I have had so many times where I have tried to go out with friends to only talk about my son and worry the whole time about my son! As he has gotten older it has gotten easier but sometimes he has days where I have to cancel last minute & then I feel guilty about that! The few friends I have just have to understand. It isn’t fair to them but it is what this life is.

  11. Darci

    We find it hard to go out too. We do, but its only to the grocery store and familiar places for our son. Thank you for sharing.

  12. Profile photo of FlappinessIsFlappinessIs Post author

    Yeah, they do. And I try not to be exclusive in my attitude. Clearly, it isn’t a character deficiency to not have special-needs kids. It’s just one of those things that is what it is.

  13. Marcia Clodfelter Cross

    My husband and I live with my daughter and her family just because of her two boys. She works during the day and I homeschool the 6 year old and the 3 year old. We are with the boys almost all the time and so I relate to what all of you are saying. What I don’t understand is where are your parents? Where are your siblings? It takes a houseful of adults here to handle two boys. I cannot imagine their not having us to help. We keep the boys for her to go visit friends and she doesn’t have to worry what they are doing. We go off on our own as well when she has them. If any of you want me to write your parents for you or something like that, let me know!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      God bless you, Marcia! I’d love to sic you on my mother-in-law. Lol. Sadly, I do not have siblings, and my mother lives out of state. My dad helps when he can. My husband’s mother (see my post titled “Ten Things I Wish My Mother-in_law Hadn’t Said About My Autistic Child and The One Thing I Wish She Had” to gain a better understanding of THAT situation) babysits when it is convenient for her, but often causes me more stress than it is worth. I am blessed to have dear friends with the most wonderful teenage daughters who relieve us from time to time, but it is HARD not having everyday support.

      1. Marcia Clodfelter Cross

        I did read that about your mother-in-law. It agitated me really badly. It is not that my husband and I are well off and able to retire early and have given up golf to keep the kids. We are both disabled ourselves and struggle on social security disability together with my daughter who works in an office. Her husband recently left for the third and hopefully final time. I can understand parents who need to work to pay necessary expenses having to do so, but it does seem to me they could watch the kids some in the evenings so the parents can have some time without worrying what is going on. Of course, they would have to be around the kids enough to understand their needs and routines and be willing to deal with them the way the kids need to be. But, isn’t that part of being a parent? I am still my daughter’s mother. I am sure that if she and her husband had moved to another state after they got married and then the boys arrived, we would have done everything possible to move where she was, or her come back here or something. I do, absolutely, realize this is not always possible. I do. But, sometimes…it is.

      2. Profile photo of FlappinessIsFlappinessIs Post author

        Marcia, you are the most wonderful kind of mom on the planet. The kind who remembers that she will always be a mom – not just when her kids are under 18. If you are looking to adopt, let me know. lol

    2. Jenny Saul-Avila

      I know you are specifically asking someone – but for ourselves, we have family that babysit SO often – the grandparents on both sides babysit while I work & everyone else we know has their own family engagements on a regular basis – it’s hard to find a babysitter to just attend a social engagement. And a lot of our social gathering invites now are with other parents of children who will be there – we want to bring our son – but often, it’s just not in the cards w/o him being without a nap & coming home over-stimulated & a total mess.

  14. Kallie

    Wow – those could have so easily been my words (had I even had the composure to have crafted them so eloquently) just a few short years ago. The friend I so wish had read these words is no longer a friend. While I patiently listened to her blather on about her own health needs, reading concerns with daughter, in law issues, etc., her interest in listening to me blather on about my sweet boy was none. Not only was I dying inside about all that was going on with my sweet baby, my friends didn’t/couldn’t/wouldn’t understand. The loss of this friend still makes me sad and angry, even 3 years later. In fact, this year I didn’t put the ornament on the xmas tree that she gave me – it’s headed to the goodwill box. I only want happy things on my tree, and the reminder of a “friend” who wasn’t really a friend when the going got rough doesn’t deserve a place on the tree. Maybe now I can let it go!! @Marcia Coldfelter Cross – your daughter is SO very lucky to have her parents doing so much for her. What a blessing you must be! Unfortunately, for many of us, our parents & other family members still work, live far away, or are just unable to help us. My parents and sister did as much as they could, but with full time jobs and owning their own business, they couldn’t always be here. Not to say they didn’t show up immediately after an emergency phone call from a sobbing momma, they just couldn’t be here as much as I needed.

  15. bellab85

    I am a parent to four special needs children. (three have Global Development Delay and my youngest has cystic fibrosis)
    I have fallen in love with your blog. You write from the heart and speak my language!

    I feel absolutely blessed to have at least two friends in my life who understand that I cant pop over for coffee, I cant come to parties anymore (because it just causes so much more stress I cant enjoy myself) The invitations to go out have dwindled over the years, but we still get some. We recently attended my best friend’s birthday party. We were able to find a babysitter for two children and took two with us. It was a great night and my friend hugged me tight just as we left and said how happy she was that we were actually were able to make it. While I was incrediably happy to be there myself, what she said had tugged at my heart strings because I felt guilty for placing my friends (and therefore, myself!) on the backburner.

    A part of me wants to strive to socialise a bit more…but then there is that little voice that pipes “Do you really think it’s going to be able to happen?”

    Thank you for your post…actually…thank you for you blog!!

  16. Jen

    Oh! SOOO true!! Dominating the conversation, or not wanting to talk at all, the pool party, all the knick knacks-been there felt/done that! We brought our older, special needs daughter home last year and even as prepared as we were, nothing can fully prepare you for life with a special needs child( and add trauma issues on top of that). And people just don’t understand our new lives now and how it impacts every aspect of it. We see through life through what I call “Kim Glasses”. As in how would that situation affect Kim? Its just our life now.

  17. Jen

    From a parent of 2 NT children (I have 3 friends who happen to have autistic children), I can honestly say that Autism fascinates me. I would love to know more about it, and how to help the children/adults/parents. When I see a child having a tantrum/meltdown in the shops, my first thought is ALWAYS “I wish there was something I could do to help”.
    I stare because I have Aspergers Syndrome – I have a very mild form of it – I study faces, which often means that I have too MUCH eye contact. I am studying all parts of faces, and often get accused of staring.
    Please don’t assume that all people that are staring are judging. A lot of them wish they could do something to help your child deal with the meltdown, or wish they could comfort you in some way. We just don’t know how to even BEGIN to help.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      You know, autism has always fascinated me too. It began with trying to understand two family members who have it, and, since then, I have always read every article or news feature on the subject. So, initially, I thought it might be paranoia when my son showed signs. It still fascinates me. I have actually been considering working on a master’s degree in speech therapy or behavioral analysis.

      I would say that the biggest thing you could do would be a simple smile and a kind word. I’m always worried that we have ruined the shopping or dining experiences for others. A simple “Don’t worry about it” would do wonders for me. :)

  18. Stephanie

    Just went through a playdate on Tuesday! I often wonder why I go to those things when I never have any adult interaction time anyway. It really is frustrating.

  19. Aspergers Mum

    then there are the comments when you go or when you decline
    * ‘didn’t he do well, he was so good, it is so good for him to come to things, you need to do it more often’ – as if ASD is solved so easy – he has been in day care since day dot, so don’t you think that would have ‘fixed’ him if it was that easy
    * when we decline ‘he has to live in the real world so he has to get use to it you can’t shelter him forever’ ( he is only 4)
    * when we decline because of high anxiety ‘you have to know when he is just being naughty and tell him off’ thanks MIL really appreciate your understanding here – we know his signs, we know his triggers, that thing he is doing with his hair, well that is a sign that there is MAJOR ANXIETY, and although he hasn’t melted down it will come -we know when he is just being ‘naughty’….

    and then they don’t see the meltdown when we get home, the time it takes him to get to bed the fights with his bro…

    Sorry, been a hard Christmas, as bad a this sounds, it is so much easier when he is at day care as there is more of a routine….

    Oh, and to add context my son is a 4 yr old with Aspergers with high anxiety.

  20. Andrea

    I would love to forward this to all my friends without special kiddos. In fact, I am thoroughly enjoying your entire blog. You write honestly and with humor, what we experience daily. Thank you for making it seem a little more “normal”.

  21. Brooke Farmer

    I can so, so, so relate to this. Except with my son it is anger and difficulty with other kids that make these gatherings feel impossible. He’s thirteen and it’s getting better. But, when it comes out, he’s thirteen and bigger than the other kids a lot of the time. So I spend my time desperately trying to keep my eye on every interaction he has in case something happens that might trigger him so I can instantly interceded.

    And it’s exhausting. Special diets help, but they mean constantly bringing a large array of expensive specialty treats to every gathering (no gluten, no dairy). And sometimes I simply can’t afford it. When I can I feel guilty if it is a potluck type situation that I’ve brought only his foods and nothing that anyone wants to share.

    Somedays it’s just easier to hang out with him at home. He’s does really well with adults. It’s other kids that present problems.

  22. El Salvador from the Inside

    This post brought tears to my eyes, reading it as a complete outsider to the world of special needs children, or any children for that matter. What you are going through is so incredibly hard that even a typical day is a very trying experience. The friends who don’t see you much anymore do not know what your day is like and you described it quite well in this post. Thank you for letting people ignorant of your situation understand what it is like for you.

  23. kay

    I loved it,even though I have grown sons,this still tells the story of so many of us,one day or another.I was very good,thank you!

  24. ashlie

    everything I’ve wanted to say to my friends that keep inviting me over “that I can’t sit and have fun with you because I am going to be too busy making sure my daughter with PICA isn’t eating everything she finds laying around your house, or that she’s not jumping off of furniture because she has no knowledge of danger, that I will be too busy making sure my son isn’t destroying your house.”

  25. Suzanne

    I love this post. It says everything I feel about my realtionships with friends (although I would also add replying to emails that aren’t URGENT). Thank you.

  26. Cathleen Harvey Spacil

    I saw one of your posts on Facebook from a friend… My daughter isn’t autistic, however she was diagnosed with a brain tumor when she was 5 years old that destroyed her pituitary gland and the part of her hypothalamus that controls hunger and appetite so she’s in starvation mode all the time. Along with that comes a whole gamut of behavioral problems, including temper tantrums in the store (as mentioned in one your posts), no one wanting to babysit (because she’s too much to handle), and the list goes on and on. Until your blog/site, I have never known of anyone else who deals with the same stresses that we deal with day in and day out. I absolutely LOVE my sweet little girl and am so grateful we didn’t lose her 9 years ago to that horrible tumor, however life did definitely change overnight and life for her is a constant struggle. Thanks for your words here on your site. They are comforting knowing that there are others out there who, although the are struggling too, are able to be a support for each other. I have a site too where I’ve been trying to help others… My site is http://www.brainbehappy.com... You can read about us there… Thanks again!

  27. Chez

    Oh…my…goodness. You just said what I haven’t been able to articulate for the past 4 years. My youngest is not on the spectrum, but has prioproceptive sensory resistance, sleep issues, a history of sensory related meltdowns and difficulty with communication for the purpose of meeting basic needs. Thank you, endlessly for saying what I simply could not compile into words. It’s good to feel recognition and to know that I am not alone!

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