“Patience:  A minor form of despair disguised as a virtue.”  ~Ambrose Bierce

I’m a fairly patient person.  I’m not one to speed.  I can frequently be heard telling my husband, who has severe ADHD, to remain calm and that we will find whatever lost thing he is looking for.  I don’t get all that upset waiting in line.  And you’ll never hear me getting angry with a server because our food is taking too long.  I’m capable of being cool as a cucumber and have had more than one person proclaim me the best person to teach others how to drive a standard transmission.

So, I would have thought that I would be a good candidate for tolerating the wait-and-see of my son’s developmental delays.  For some things, I have been.  My husband gets all bent out of shape worrying about Callum’s self-limited diet of chicken nuggets and, well, basically anything dry and crunchy.  He was terribly worried about our son’s slight delay in walking.  And he asks on almost a daily basis, “When should we start potty training him?”  I know that it annoys him how calm I remain about these topics.  I was convinced that he would walk — and he did at 16 months.  I keep telling him that eventually Callum will eat other things and that we need to worry about more important things. ( I don’t really know this to be true, but it seems to pacify him — so I keep saying it. ) And potty training?  With autism already in my family, I am well aware that we could be in for the long haul.  At the very least,  Callum will probably be behind everyone else with regard to toilet training.  So, I choose not to sweat those things and keep up my annoyingly calm facade.

And it is a facade.  Because underneath all of my protestations that all will be okay, I am terrified about one thing.  When is he going to talk?   I know I am supposed to adopt an attitude of keeping-up-therapy-and-hoping-for-the-best, but I confess I suck at it.  I know that talking is not the measure of success for autistic people.  I’ve read stories and blogs about lots of ASD folks who use assistive communication and writing.  But I’m selfish.  I want him to talk.

Since I was a little girl, I have always been a lover of language.  I was a bookworm who read my first pictureless novel in the first grade and was reading almost a book a day by middle school.  When I came across a word I didn’t know, I ran to a dictionary and practiced using the word until I knew it.  Idioms have always fascinated me, and I have always sought out their origins.  When my mother was going through her antique shopping phase, I would find myself in the back of the store, looking through the old books, scrapbooks, and antique diaries.  Finding just the right word when writing, for me, is akin to a painter finding just the right color or brush stroke.  I happen to think Wikipedia is one of the great wonders of the modern world.  And I happen to believe that being illiterate is just about the worst thing that could happen to a person.  I’m the aunt who gives books to children for holidays, and I am the moderator of not one, but two online reading groups.  In my teaching career, I have been both an English teacher and a school librarian.  Suffice it to say, language defines me as a person.

But language might not be part of Callum’s life.  I don’t need my son to be captain of the football team, popular, or a genius.  But, oh, how desperately I want him to be able to communicate more than just his immediate needs.  I want him to have the power to seek information and to learn about his interests.  I want him to be able to seek out minds like his and make connections to the world.  I don’t want him to be trapped inside his own mind.

On one hand, I am trying very hard to accept that he may never talk.  After all, there are a whole lotta folks who have been in my shoes who prayed just as hard and didn’t get this very same thing.  And they have a lot of wisdom to share about changing one’s dreams and expectations.  I have no doubt that all of that is true.  The problem is that I’m just not there yet.  I’m still in that bargaining with God phase.  And I worry I’m never going to get past it.

I have said before that autism is a fascinating thing.  And it is.  But it is also a cruel tease — giving us small glimpses of the minds contained within before slamming the door shut again behind a series of elaborate and confounding locks.  It isn’t that I want him to leave the room altogether.  It’s just that I would like a really good window out of which we can see each other.

Right now, Callum is giving us a lot of good signs.  He has a few words that he uses when he feels like it.  Clearly, he has some receptive language.  Ask him if he is ready to take a nap, and he will dart to the other end of the house in an escape attempt.  He will sit at the table when asked and put his sippy cup down rather than throw it when we insist.  Say “bath”, and he enthusiastically makes a run for the tub.  He takes our hand and leads us to what he wants.  He’ll open the refrigerator and reach for or hand us the milk, saying “Pees?”.  And he’ll occasionally say, “Joo” when asked if wants milk or juice.  He gestures for help to get on the bed to jump.  If you tickle him and roughhouse, he will pull your hand back to do it again and say or sign “more”.  And he babbles with inflection all day long.  He has pretty good eye contact, is curious to see what we are doing, and “checks in” with us repeatedly when running around the house doing his thing.  There is no doubt he has the “communicative intent” all of the resources I have obsessively researched on the web have said are good predictors of speech development.  And he is still three months shy of being three.

Yet, I drive myself crazy because I know that, when it comes to autism, there are no certain predictors of anything.  And the broken record in my head starts again. I often feel stuck in a state of worry, and I can’t seem to get unstuck.

I’m trying to cut myself some slack here.  I know that I am new to this.  And I know that, at some point, I will move beyond the bargaining with God phase and into acceptance of whatever may be.  But I find it’s not happening fast enough to suit me – which brings me full circle back to the subject of patience once again.

How do so many of you reach that place of patience, peace and acceptance?  And how long will it take me to get there?

27 responses »

  1. Jen says:

    Jeremiah did speak until he was three, and for two years, no-one but immediate family who spent alot of time with him could understand him. I had him evaluated for speech therapy several times, and didn’t get it until after he turned 6. I think what really encouraged him to talk is that his baby sister came along, and he wanted to talk to her, and then, she started talking and he was in competition with her. He really is very smart, but now, at almost 7 and 3 1/2, his little sister speaks more clearly than her brother, but his language skills are at a 12-13yr old level. It’s just the actual communication- clarity, making correct sounds, etc. that he is delayed to a 4yr old level on. He can use words like catastrophe, or cataclysmically, and other really big words I don’t even use regularly, and he knows what they mean and can use them correctly.

    So, there is hope for Callum. My son did similar things to communicate wants and needs, and he has always had fairly good eye contact. One of the hardest things though, is resolving the meltdowns, especially when I had no clue what triggered them, or when frustration at not being able to communicate his thoughts took him over the edge.

  2. Eleanor says:

    Just when I start to worry that my son isnt going anywhere, and start to question how much I have been doing for him (his school and teachers and therapists are all amazing).. he makes a GIANT jump.. hang in there mama.. ❤ my little boy (who turned 4 in September) is about verbally the same as yours.. only Phoenix in the last month has added his ABCs and counting.. again, just as i was wondering if we had plateau'ed and what I needed to start pushing to get him to move ahead ❤

  3. Colleen says:

    I’m sure you have heard so many autism quotes by now. One that I always remind mysel of is “autism is a marathon, not a sprint.” When our daughter was finally diagnosed at age four, I thought it was a sprint to “heal” her. If Jenny McCarthy could do it for her son, so could I for my child. After a year of sprinting (me, not my precious daughter), I finally slowed down (exhausted) and accepted that we were running marathon. It’s not easy and I certainly do not have the patience I wish I did. You just do the best you can with what you’ve got.

  4. Well… I’m not there yet either, so I have no advice… I’m like you described too: usually quite patient in lines and traffic,etc.. but once you take away the logical ending, I’m lost. My son is 6 (tomorrow!) and though he can speak somewhat now, there were years where I was at a total loss of how to communicate with him. Even now, I fret about his future… Will he be able to go to college? Live on his own? Get married? Have children? I have no answers and it bugs me to no end… 😦 This is a matter of living in the present, as someone else mentioned, and having faith. Preaching to myself here. 😉 Thanks again for just writing. Everything you wriite on here is obviously straight from the heart and so honest and upfront… things I wish I could be with others, but I always put up protective walls b/c they don’t understand unless they’ve “been there”. Thanks for being so open and honest. 🙂

  5. Beverly says:

    I’ll confess that I didn’t read all 22 of the comments left by others. No offense, you’re all wonderful… I’m just short on time. But I did want to tell you that I am the mother of a 12 year old with autism. For years my husband insisted that our son wouldn’t speak. He adopted a brave front of that’s our child and we’ll love him no matter what. I love him for that, but I was ever hopeful. I never doubted that one day we’d hear that sweet voice. After many years of speech therapy, and a particularly wonderful therapist, I can now have a conversation with my child. Granted, the subject matter is almost always what he wants to talk about, and the speech isn’t perfect… but my sweet boy talks. It took time. He wasn’t stringing sentences together until 3rd grade, and it wasn’t really until the last year that he was able to be understood by strangers. Hang in there Mamma.

  6. goccediacqua says:

    Your post makes me think of a lot of things –
    of the Reggio Emilia idea of the ‘100 languages’ of children
    of Annie McDonald (http://en.wikipedia.org/wiki/Anne_McDonald)
    of signed language

    but the question you have posed is how do you cope with the waiting
    if only we knew
    perhaps it is helpful, though, to be reminded that this is a human struggle that you share with most people
    think of every teenager fretting about whether she will ever find ‘the one’
    we all struggle with how long we have to wait to find out how it turned out in the end

    the best answer I know of to this problem is ZEN
    we have to work on the skill of being in the moment
    I came across a nice book once about Buddhism for mothers – it talks of learning to be totally in the moment when washing dishes, for example
    (I’m not a Buddhist, but I can see the value of these teachings)

    being constantly in a state of trying to imagine the future is exhausting
    but we can cultivate the skill of pushing those thoughts away, and allowing ourselves to simply be, now, in this moment, with no past and no future, no judgment and no hope

    one of the reasons we love little children is that they know how to just be
    they have not yet become dominated by plans and timetables
    they can forget themselves in the moment
    when we let ourselves, we can re-learn from them how to just be

    I wonder if your son has more present in his life than past or future?
    does he have moments of just enjoying what is?
    I wonder if he can help you learn how to push away those thoughts of the future that crowd your head?

    can you pause for a moment and just watch him bounce on his trampoline
    and nothing more than that
    just see how his hair bounces
    how he works on his balance
    how he enjoys the sensation of the change from going up to going down
    how he bends his knees to give him lift off
    totally focussed on that with no other thought in the world

    could that be your meditation?

  7. The Hook says:

    Neither one of us may ever get there, but as we keep trying the battle will never be lost.

  8. […] I was reminded of this poen while reading a post over at Flappiness Is  […]

  9. Alienhippy says:

    Hello my friend,
    I know what you are saying here, there are so many things I would love my *CAL to be able to do. Also the ADHD panics of lost things I totally relate to with my *AJ. It can drive me nuts sometimes.
    My *CAL didn’t talk until she was 3, she babbled and pointed. She still struggles with finding the right words at 11years of age, but she is learning at her own pace. I thank God that she is a reader and can enjoy being lost in her books. Academically she does fine, socially she lacks confidence. But she can write and express through music, art and just being herself.
    As you already know I am dyslexic and only learned to read at the age of 26, this was very isolating for me as an Aspie. But I did connect with music, art, and poetry. I communicated in my own language of babble (I still babble) and it was only when going to school that I went quiet, it was when I was about 8-9 years old. I started to realise that I was different and kids can be cruel. But I was still able to communicate with those I knew loved and accepted me, my Mom was a wonderful Mom.
    I think now, when looking back, even as a tiny child I had a faith. I know exactly what I was communicating and I also knew that God understood me. I sang songs in my own language, and I remember singing about umbrella’s to God. I think I was about 5.
    I wrote a poem about this and your post here reminded me of it.
    Thank you, I think I will reblog that poem today.
    Keeping you and your family in prayer.
    Love and hugs my friend.
    Lisa. xx 🙂

  10. OUr son was diagnosed PDD-NOS at 3 and didn’t start to speak until he was almost four. I thought it would never happen. now at 7 he chats non stop with a big focus on dinosaurs, he has a sense of humor and loves the girls at school. He is able to recite whole chunks of dialogue from what ever movie is his current favorite (always in context) he delights and astounds me.
    I am also a patient Mum, and never mentioned my fears to anyone regarding his speech. When he was little I wouldn’t give him what he wanted (he would lead me and put my hand on what he wantsed) until he attempted a word. He loved the computer so I put together folders with images of pooh bear and he would point to the one he wanted and progressed from there.

    I hope your little boy has the joy of language and so many other joys …

  11. I can also relate to all the other parents on here. My son showed signs of autism early, and was diagnosed early- at 16 months. Although I saw it, knew what it was, and sought a diagnoses and trreatment early on, it still took me from the time he was 16 months until he was 5 to really accept how things are, and to face reality. Today my son is almost 7 and he amazes me everyday. I too try to compare him only to himself, and not to anyone else. He is unique, and he makes me a better person. I appreciate the small things he accomplishes and am grateful for any small steps forward.
    Do we have bad days? Oh yes! Do I still cry and grieve? Oh yes to that too! But overall I find that it takes time to grieve what you perceived to have lost, and to learn to accept what has been given to you. We all grieve differently- and it is ok to take months or years to come to terms with it.
    Just know, we have all been there, and we have all put on that brave face to make it through another day.

  12. Angela F says:

    I so totally understand the facade you speak of. I have been there and still reside there on some days. I can offer only this – make yourself a list of where your son is with regard to the areas you are concerned about (actually you just did above) and track his progress only against himself. Don’t list what he isn’t doing that is what IEP’s are for – list only what he IS doing. Don’t compare him to anyone else – this will drive you crazy. Every child meets milestones at their own pace but kids with issues should not be compared to peers – which by the way is what standardized testing does. If you measure him as compared to his own progress you might be able to give a boost to your patience. You will see progress documented. I’m not saying it is easy but it might change your focus a bit. As for potty training – have mercy – might be the most difficult thing you do in your entire life……measure progress for that too and sitting on a potty counts (for longer increments of time) as progress even if nothing happens. Wishing you the best.

  13. Sue says:

    I am sending prayers and hugs to you.

    I know I am one of the lucky ones because my daughter is verbal and she is able to write her thoughts clearly, but regarding acceptance of how much harder life is for her due to ignorance, honestly, I still am not accepting of that. I know how hard she has worked and how hard she continues to work to accomplish her goals. I know how she struggled to fit in at school and how heartbroken she was when others misunderstood and wounded her causing her to leave school. I also know how many people have let her down and even continue to let her down.

    I am accepting of the diagnosis and understanding of her, but I still want to change the world to make things better for her and as you know that is a major frustration for me at the moment. I hope and pray for a brighter future with an understanding and kind world for our children. I still dream even when at times I too am wounded.

    I know our children are here for a purpose and I agree with you that they are our children for a reason. You are so strong in so many ways and I admire you for that. Do not beat yourself up for having doubts and fears. You are after all a mom who wants the best for her child and that is never ever a bad thing.

  14. gpigwhisperer says:

    My son didn’t start talking until 28 months. He was originally diagnosed with “classic” Autism because of this. I cried, I grieved and then I decided that Que Sera was going to be our new motto. After 5 very intensive years of therapy, he was stringing sentences together as well as his peers did. He’s 17 years old now. Language is still not his strongest subject- he got his first “earned” A in English this semester. But, he will also be graduating community college 5 days before he graduates high school. He’s planning to move away to a 4 year college next year. If anyone had told me that 15 years ago, I would have shook my head and said “no way.”

    Autism is a long, windy road that twists and turns differently for every person who walks the path. Enjoy the smiles and “joos.” Some day, you will look back and shake your head at just how blessed you are by Callum.

  15. Belinda Phillips says:

    Here’s my thoughts – Be kind to yourself! There is no right way and no wrong way. There is not a period that you have to get through to reach a place where you handle everything well. Whatever you are feeling are your feelings and they are real and they are legitimate. Honor them!

    Please know that you are not letting your son down. You are an amazing mom who is trying to figure out what to do as you go down a path that is different than you expected. There is no question that you love and appreciate your son for who he is and that he knows that!

    XOXO Belinda

  16. Jeetmom says:

    I can understand what you are going thro’, I have come past that phase and learnt to accept my son a true gift of God in my life, who has changed my life to make me a better person. But it was not an easy journey! I have transformed from a impatient and short tempered person to a more caring and patient one; all thanks to my son, who is 17 years old now. He is non-verbal with a few words, but he communicates through typing. He started of using facilitated communication training and now is independent typer. I found him to be having great vocabulary and also a poet. He surprises me all the time with his wit and incisive mind.

  17. Stacy says:

    I’m not so much concerned with talking as communication. If communication happens to come in the form of sign language or a speech device, I’m OK with that. To that end, we bought Travis a tablet for Christmas in the hope that we can get him started with using it for some form of communication. The therapists all agree that he will probably talk eventually, but he shouldn’t have to wait until he can talk to be able to communicate. I want to know what he’s thinking, darn it!

  18. I can hear and understand all the fear and pain behind what you write. My son has language but there are a list of other things i worry and obsess over with him, aggression probably being fore most. there are so many times I think, if only I could know what his life will be I could learn to accept it, whatever it is. then other times I read these stories of moms who never listen to what people tell them about their children and literally seem to will a miracle breakthrough and I feel desperate to try and be that kind of mom for my son. there seems to be a delicate balance between acceptance and fighting that i have yet to figure out.

    • FlappinessIs says:

      You just said that beautifully. That’s exactly how it feels — if I could just know, then it would be easier to accept and learn to adapt to/help. The desire for a miracle is a powerful desire indeed. It isn’t that I don’t want him to have autistic tendencies. That’s who he is. I just want him to be free to come out of Callumland at will. Kind of like having dual citizenship, you know?

      Thanks. I needed that response today. 🙂

  19. Jay says:

    I have recently begun following your blog after a colleague forwarded your apology letter to me… Amazing! I am a parent of many … and work full time in the special education field. 3 of my children are on IEPs and 1 is on the spectrum as well as another with ADHD. You say many of the things I know parents (myself included) think (regardless of their child’s ability or disability). We often become defined by our children’s dx and our life becomes research, advocacy, appointments and grieving. I think that sometimes the best we can do is breathe and try to accept the day, our child(ren) for that moment and not drown in the what ifs…. the what should be… the could have beens…

    it is a marathon not a sprint.

    Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly,  
    Laugh uncontrollably, And never regret anything that made you smile.

    • FlappinessIs says:

      Thanks for the reminder, Jay. Love the quote, btw.

      I guess it is important to also remember that people train differently for marathons than they do for sprinting, huh? Hmm. Sounds like a great start to a metaphorical post…


  20. susan says:

    just to let you know that my nt child did not speak at all til he was two years and 4 months …I was not that worried as he could understand what we were saying…give your boy (and yourself) time

  21. Melina says:

    Great post. I’m much the same. This is how I look @ it. I am a very functional person. I choose fit and function over brand names any day. I thrive on purpose and in my life i’ve always quickly tossed out the things which don’t serve a purpose or fumctiin well. Dysfunctional things slow me down and have always been a waste of time. However, wgen you have kids with ADHD & Autism, they’re not junk that you can dispose of. Lol. This has really been my main struggle as well as I need everything to function well with logic.. That is why I thought I was patient as well, like you said, because long lines, food, even order mistakes, etc, nothing ever gets me upset. However, that is because I can foresee rational, LOGICAL problems that will potentially arise. So when I know what to expect or what possibly could go wrong, I remain calm and patient.
    With autism, Nothing ever goes as planned, expect the unexpected, and get used to “winging it” because there is no way to rationalize what may happen. There is no logical explanation for most of what happens. And when logic is removed, I get angry. Impatient. I don’t function without logic. I spent two years cleaning, bathing, scrubbing walls, tvs, books, toys, etc. Melinamedoing mutliple loads of laundry, shampooing carpet, etc. Because our son was obsessed with playing with poop. I cried everyday for two years. That is just one example. I am sure you have your own. Just know, you are not alone in this!
    Thanks for sharing.

    • FlappinessIs says:

      You explained that better than me. That is exactly why most things don’t upset me. I can weigh them by worse things and make reasonable predictions. You can’t do that with ASD. Unlike other conditions, there isn’t a natural progression of anything. The not-knowing can make you nuts. I’m working on it, though. I guess that’s the best I can do.


  22. Karen says:

    I found this blog from a retweet on Twitter and it was like someone had been reading my mind and putting it on the Internet. My 7 year old son has a genetic condition called Fragile X. It causes Autistic behaviour, learning difficulties and Speech Delay. I always knew he would talk, but I was never too sure of when. However over the past 2 years he has started to talk and is improving all the time. You can now hold a simple conversation with him, he can ask for what he wants or tell you what he doesn’t want. And as a result some of his behaviours are easing off. So much as I hate to say it to you, Patience is indeed a virtue. And it will pay off in the end!! Hang in There!!

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