The Road Less Travelled

I am currently in a Bad Place. A place in which I cannot stop Googling ‘expressive language disorder’.

I woke up on Tuesday miserable, but slightly cheered by the knowledge that Harry’s speech therapist was coming in the afternoon. So, naturally, she phoned to postpone. I quietly told her that I had been upset by suddenly experiencing how far Harry has been left behind by a little girl who matched every achievement of his first year week for week. She was sympathetic, because she is a nice girl, and asked me if I still wanted to proceed with a referral to IDS to look at Harry’s balance issues. I said yes, and only after I put the phone down did I look up precisely who the IDS actually are. The Integrated Disability Service

What’s in a name? Umm. Everything, it appears. Not just the semantics; the US would call this service Early Intervention. Encountering the loaded ‘disability’ word immediately caused me to have a mental shut-down. I have managed, although I realise I may not have sounded so on this blog, to stay reasonably optimistic apropos: Harry’s language problems. Suddenly, I was looking down the particular trouser of time in which my son’s speech never develops.

Harry has made no verbal progress that I can discern: his words are still impenetrable thickets of assorted sounds to me. He repeats single ‘words’ over and over, pointing imperiously and insistently into the sky, at the ground, at the shelf, at the wall. He is desperately trying to name, or tell us… something. We carefully scrutinise along his finger line, looking for clues. We touch objects, name them clearly, and look back at him enquiringly. If we don’t locate the correct item – and half the time, I think he has no clear idea himself what he actually wants – he eventually gives up and, often as not, descends into a screaming, teary mess. We have tried hard to encourage him to make eye contact with us once he has honed in on something he wants, but he just stares intently and points, still working hard on perfecting his Jedi Master object-levitation trick.

I have started to think: there are some words that Harry hears from us upwards of 20 times a day. Daddy. Tractor. Dog. Sheep. Crayon. Shoes. Socks. He identified these things, and many others, long months ago, but the part of his brain that tells his mouth how to say them does not appear to be functioning. The fact that he hears these words so often and yet is still unable to pronounce a consistent approximation of them has now dropped me into a dark and panicky mental hole where I cannot logically reduce or conquer the fear that Harry will struggle, badly, with language all his life. Will never go to grammar school. Will never go to university, unless he tries universities online, which is never the real “college experience”. Will never achieve his potential. Will never allow me to forget that my body failed him. 

It must, must, must have been me. But it irks me that I may never know for sure if Harry was truly neurologically compromised in utero. This is not the type of thing you bung a toddler in an MRI machine for. I know he had no major bleeds at 2 days old, because the NICU staff, suspecting brain trauma, performed cranial ultrasound. AND a lumbar puncture, but let’s not re-visit that because I want to sleep tonight. But ultrasound, as they told me, is not a particularly delicate tool.

Part of me wants to have concrete proof that Harry’s brain has been damaged in order to have something nice and heavy to wildly batter the ‘speech delays are entirely normal’ people around me with. Listen, pal – when you repeatedly hear your unborn child’s heartbeat drop down into the 50’s, the paediatrician tells you he suspects your son is neurologically ‘compromised’, your son has been walking for 8 months and still spends half his time flailing wildly for balance, etc, etc, you tend to be a tiny tad resistant to that sort of comfort. 

The other part of me knows full well that I would look at that proof and think: ‘I caused that. Look what I did.’ And never recover.

It makes no odds, either way. Makes no difference to his current treatment. But this week, I am depressed, up-tight and tense because I thought, after a reasonably uneventful babyhood, that we had dodged the bullet. I’m now thinking that perhaps we haven’t after all. 

Emily Perl Kingsley:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean, Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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20 Responses

  1. Well, most of all I want to send you a big hug.

    I can’t walk in your shoes but as an outsider to the situation I want to say, remember how many shades of gray there could be. If Harry has a disability it doesn’t mean that he will never speak. He could be delayed by a year or two and then catch up with his peers, with language skills indistinguishable from theirs. He could have some issues that persist but are addressable with therapy or accommodations. Even if he were to never speak, he clearly interacts with you and wants to communicate. He wants to be out in the world learning and doing.

    (Also, the thing where you try to identify what he’s pointing at, and can’t, and he gets upset–that, at least, is completely normal for this age.)

    Finally–again as something I know it is much easier to say than believe, but I still want to say it–this is not your fault, you did not fail him. You did all you could in the situation that you were in, but bodies and life are imperfect and often cruel to us.

    Many warm thoughts from across the pond.

  2. I’m sorry this is weighing on you so heavily. I wish I could reassure you that everything will be OK.

  3. The commenter “L.” has certainly said what I would like to have said, so read L.’s comments twice.
    Do you know “Fighting Monsters with Rubber Swords”? (www.schuylersmonsterblog.com) Schuyler does not speak clearly and uses a communication device. If Harry really has a language disorder, there are tools and techniques. I have no doubt there are therapies for balance problems if you need them.
    Self-blame–I don’t know how to help with that. Be gentle with yourself. Of course you always tried to do the very best for Harry, and you always will. Because the modern era has overcome so many problems for us, we have trouble accepting that some things just happen–they just happen.
    Hold on, keep holding on.

  4. I teach a boy in my mainstream class with Downs Syndrome, half the time what he says is completely incomprehensible to me, but the classmates who he has known since aged 5 understand perfectly. Despite out communication issues this boy and I get each other. Teaching him is often the highlight of my day, more so than many of the other kids.
    I know you know all this, and that Harry brings you joy on a daily basis, but he will also bring joy to many others no matter what happens as he gets older.

  5. I will hug you and feed you tea and chocolate. I totally will.

    That mixture of ‘I bloody told you so!’ and ‘Oh God, oh God, why do I have to be right about this?’ and anxiety and grief for the chattering conjugating child you just don’t have is horrible enough, without the agony of feeling responsible. I wish you didn’t feel responsible. The whole thing’s a crap-shoot whether you’ve got novelty insides or not. Bastard subconscious, leave Ann alone!

    And Harry will be wonderful and clever and lovely and a light and a treasure to the world even if he remains unsteady on his feet and unclear in his speech. Neither say anything about his intellectual development, in any case. He’ll be wowing them at Harvard yet (why Harvard? Is that a line from a song or something?).

  6. I would react in exactly the same way. And I’m sorry. And from everything you’ve written I think that no matter what, you will get through. Because you are you. xx

  7. I cannot imagine how frustrating it must be for poor master Harry to not be able to get his point across, and how hard it is for you, too.

    xx

    g

  8. I agree with the others. You all will get through this. Harry is such a lovely boy – he will find his way to get his point across. I will also go round and have words with the speech therapist. Your well being is part of her remit too and no shows are not acceptable. I wish I could do or say something helpful. Thinking of you.

  9. Firstly, what a completely superb piece of writing you end with. Well done for finding it and even better done for taking it to heart.

    Secondly, we can only take responsibility for things that are within our control. We should take absolute responsibility for those – and the burden for doing so can be heavy beyond bearing. But you are a victim of random biological happenstance, and so is Harry.

    One thing that upsets me (ha! poor me!) is when women categorise births that have required heavy medical or surgical interventions as a failure. The maternal death rate used to be roughly the same as the current cesarian rate. There’s a reason for that. I went to a carol service at Christmas, and up on the wall is an early 19th C plaque in memory of a woman, placed there by her husband and father. She was 17, and less than nine months in to her marriage. Both she and the baby died. So births requiring intervention are a huge fucking success, for the mother, for the poor wee sprat of a babe, and for the medical and surgical teams. You did the best you could and even so the shit that happens happened. But you did the best. Shit’s like that and it is completely un-fucking fair, but it’s like that.

    Finally, my neighbour works with autistic children and she uses picture communication cards with them. I assume that she means something like this: http://www.dotolearn.com/picturecards/printcards/index.htm Certainly worth asking about. She describes them as being used by children who have linguistic abilities, but not verbal language.

    Courage, ma brave. You are right, Holland isn’t Italy, but at least they don’t pinch your bum tbere.

    A/B

  10. It must be so hard. But the fact that he points at things is a very good sign. My nephew does not speak, point or wave as yet.

    Awaiting developments is so frustrating.

  11. A/B said everything I wanted to say but didn’t know how. My heart’s broken for you and for Harry, that you have to go through this, that it’s so hard and so unfair. I wish with all my might that it was different. I’m praying hard that there will be bright hope in the months to come, hope to encourage and strengthen you.

    I’d like to hear about Holland, however brief or long your visit might be.

    XOXO
    Flicka

  12. I am with the others, so sorry you are facing this and wishing things were different. L and A/B said everything I am thinking. I am keeping you in my thoughts and hoping that, if you do indeed end up in Holland, you have the best possible guides to all the wonderful sights there.

  13. Everyone has said it all already so I won’t repeat them. I just wanted you to know I’m here. I think about you and Harry and John often, and I pray for you all. Not that I could do much from Alaska, but if you need anything, like some halibut or moose antlers or something, let me know. I am sending you a huge hug.

  14. I know a lot of people find that “Holland” passage really insensitive and trite.

    But the good news is that speech catches up – and when it’s the only thing that’s affected it doesn’t really seem to impact general intelligence. It’s children who comprehend little that you really need to worry about. My prediction is that he may get a diagnosis of dyspraxia, and may always be slightly clumsy. He won’t be playing at Edgbaston, but plenty of children with dypraxia turn into highly educated adults.

    (and if you want to chat, you know where I am)

  15. Oh, my dear girl. I am so sad that you are having all of this happen to you. I want to echo the comnent above re: self blame. You did not do anything to your boy. This is happening to both of you.

    I can’t send moose or antlers from southern California…might Iinterest you in a lovely drought? An out-of-control wildfire, perhaps?

  16. I usually lurk here, and I hope that a random anecdote is comforting rather than irrelevant. My sister in law has four sons, of which the younger 3 have all had speech issues. The worst is now 11. When he was three, his speech was completely incomprehensible. He would sit and play with my daughter, the same age, and it was exactly as if he had been flown in from Mongolia or Mars or somewhere – he made lots of language-like noises, and none of them were at all like English, while she talked back to him in English, like your friend’s daughter. He had lots of speech intervention at the local specialist centre and was statemented for a while (this is in Oxfordshire) and now, at 11, his speech and intelligence are absolutely 100% normal. You would never know he’d ever had a problem. Of his younger brothers, one is normal now and and the youngest (5) most of the way there. Not directly comparable, of course, as you can never compare two children directly, but it was really amazing how much difference intervention made with him. We were sure at the time that he would have problems all his life, and we were wrong.

  17. Oh honey I’m so sorry and have nothing to offer you but virtual hugs and support.

    I will say that in all my travels some of the best ones were the most unexpected.

    xoxoxox

  18. I hope you find answers soon, or at least some comfort. It does sound like Harry is a really, really bright kid (not to mention devastatingly gorgeous), and that the problem is a mechanical one rather than anything to do with intellect. I hope his roadblock clears out soon. And I underline with the others the fact that this is not your fault (that said, I blame myself for my kid’s asthma and his ear tubes, so I know such guilt is not easily dispelled).

  19. I know this is really concerning, but I think it is too early to be sure this is any kind of pervasive delay. Do you watch child of our time? Helena, who was born at 24 weeks after her two siblings were born 2 weeks earlier and died, didn’t speak until she was 2. She’s now absolutely on a par with her peers and one of the most popular girls in her class. I think you should pursue intervention but I also think you should cut yourself some slack sometimes.

    Btw day at ‘a beautiful day’ also used that quote recently, although her take on it was ‘holland? more like beirut!’ I wish you a speedy return to a more relaxing holiday destination.

  20. Hugs to you.

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