Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Making the call

with 8 comments

I finally made the call to Early Intervention, the second time around.  I’d been putting it off, telling myself it was too soon to tell.  Somehow though, those yellow flags are adding up, and I need to make the call before they turn red.  This time, actually making the call was easier.  I already had the number.  I already know the process.  I can use the right language.  The lady was lovely, assuring me it is never too early to call (it isn’t!) and that if Cubby doesn’t qualify now for services, we can follow-up again any time before he turns 3.  I was matter-of-fact.  Echolalia.  Good eye contact.  Following directions.  Hand-flapping.  Fan-staring.  Sound sensitivity.  Tactile sensory-seeking.  Spinning.  Bouncing.  Articulation.  Pragmatic language.  Sibling study.  I reduce my beautiful, blue-eyed charmer to these terms.  It is all that needs to be said.  I say it calmly.  She listens attentively, answers reassuringly.  I try not to look at him as I speak.  The whole conversation takes just a few minutes.

And when I get off the phone and I turn to him, that is when I let myself cry.  I don’t want to do it again.  What are the official statistics these days?  1 in 110?  1 in 70?  Not 2 in 2.  Not my girl and my boy.  Both of them.  I already feel that they don’t get what they need. It isn’t fair, but I can’t rage.  It could be so much worse, I know.  I’m being melodramatic.  I know it isn’t a diagnosis.  I know it is getting help.  Help that we need.  Help that might make a difference.  Help that we might not even qualify for.  It is just the first step, the first of many.  I path I’ve traveled down before.  This isn’t a disease, my kids aren’t broken.  Theirs is a peculiar mix of strengths and weakness, a mysterious pattern that is known to us.  It is familiar now, so it isn’t as scary.

He doesn’t notice that I’m crying.  He is playing with his new bus.  Appropriately.  Making the brrm-brrm noises as it passes over the carpet.  He looks just like any other toddler.  Am I projecting my fears onto him?  Could he just be imitating his sister?  Is it something I’m not doing right?  Is it something I’m doing wrong?  Just like the first time, I wonder if it is right to make the call.  And just like the first time, I feel like it is.  I don’t want to walk this path again, but that isn’t my call to make.

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Written by Spectrummy Mummy

September 8, 2010 at 7:54 am

8 Responses

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  1. I.am.so.there.with.you.

    did the same thing back in May, felt like history was repeating itself. I felt much better after the EI eval because this time I knew what questions to ask and knew what they were looking for. (I wrote about it here at http://trydefyinggravity.wordpress.com/2010/06/01/history-repeating/ if it makes you feel better to read about someone in your exact position)

    Today I’m taking my youngest for a hearing check at the Center for the Deaf (scary sounding) to make sure his speech delays aren’t physical. One step at a time…
    Hang in there.
    Alysia

    akbutler

    September 8, 2010 at 8:05 am

  2. First of all, my heart is breaking for you, ESPECIALLY the part about 2 out of 2.

    You know both of my boys are dx but Im not sure if you know that I’ve had special needs teachers and a child psycologist tell me that they think my daughter is also on the spectrum. I’m at that same junction as you are, I don’t want ALL of my kids to have aspergers. That’s just NOT fair!

    I don’t blame you for crying – it’s a tough thing to have to deal with, but you are correct in saying that this time around you have a better grasp on the lingo , what to look for and how to respond because you’re already living it.

    I hope that you aren’t blaming yourself…..and remember that now that you’ve made the call- there’s nothing more you can actually do except wait for the outcome and keep loving your beautiful kids because a diagnosis doesn’t change them.
    Sending hugs (( )).

    fiona2107

    September 8, 2010 at 8:20 am

  3. Thanks ladies. I guess it doesn’t really matter what we want. And I genuinely do love both of them as they are. I just wish we had more time, money, resources to give them what they need. I’m sick of feeling so inadequate, and worrying about it for the future. Still, I suppose that is how most parents feel, whether their kids are on the spectrum or not. I have been thinking about this for a year now. All those articles about their being so many more boys on the spectrum, and our combined DNA. Sigh. If we’re doing it for one, may as well do it for two. And I’m very grateful for all their strengths, and that we can give them as much as we are able to. Hugs to you too Fi. Just a wave to you Alysia, if you prefer!

    spectrummymummy

    September 8, 2010 at 8:48 am

    • I’ll take a hug here 🙂 I think we could all use one. I hear you on the resources. It stinks. It’s hard when we know the data (1 in 70 for boys, siblings are more likely to also be on the spectrum) but it’s hard when it doesn’t make any sense and it can’t be explained. Yet. You are a strong mummy and your kids are lucky to have you.

      akbutler

      September 8, 2010 at 8:58 am

  4. {{{hugs}}}

    I know how you’re feeling. Both of my kids are on the spectrum too. You’re doing the right thing. Trust your instincts. One thing I will say is that I’m actually walking two distinct, but similar paths. Julia’s road seems to be easier somehow. I think it’s because we caught it sooner, and got her help super early. Somehow, her path being easier, seems to make it a bit easier for me.

    But you go right on ahead and cry. Sometimes you’ve just got to let it out.

    Laura

    September 8, 2010 at 10:05 am

  5. ugh! should I say “I’m sorry” – is that appropriate as I know that this hurts & for that I’m sorry. You love your kids, you & sparky both do (I love them, too) & if it is, it’s OK & if it’s not, it’s OK, too -I’m proud of you for calling, though – tough call to make, but a good choice, I’m sure, regardless of what they determine & realize that if he manages services based on what you both see, then he benefits from the services 🙂

    emma

    September 10, 2010 at 7:00 pm

    • Thanks Emma. It might well be too early, but as you can follow up with concerns later, it is fine getting them on board. It does hurt, but in a different way. It’ll be okay. We have the first screening on Monday.

      spectrummymummy

      September 10, 2010 at 7:29 pm

  6. […] potential.  I’m happy he is going to receive the services that he needs.  I was right to make the call.  But part of me is glad that on the day of his screening, he had a bad day, because I’m not […]


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