Wednesday, June 24, 2015

FAQ: On Developmental Delays and Asking for Help

Earlier this week Michele wrote a great post about getting help for kids who aren't "special needs" but who need a little extra help.

And her post got me thinking about a post that I've been meaning to write for a long time.  It addresses the number one question that I've found myself asked over the last not-quite-two-years since Mae's diagnosis.

How do you know when to get your kid tested?  How do you know when to start looking for help?

A few months before I started searching for answers.
Usually a parent asks me this question because they're worried about something.  It comes up because they've noticed one or two or a dozen things that don't seem quite right, little quirks or lags that might cause a dull ache in their stomachs when they think about them, or keep them up at night wondering if something might be going on.

Now I should probably start by saying that I'm obviously not an expert in this field.  I'm just a mom who's sat in a ridiculous number of evaluations and therapy sessions over the last couple of years answering questions and carrying reams of paperwork around in my bright pink folder.  But since the question has been asked so often I thought it couldn't hurt to jot down what I've learned since we first set off on this journey.

I believe that parents usually know a lot more about their kids development than they give themselves credit for.  You may not be able to put your finger on exactly what's going on, but if you have a feeling that won't go away that keeps popping into your mind, it may be there for a reason.

It also might be nothing... but it doesn't hurt to ask.

If your worried about something, mention it to your pediatrician.  Google early intervention services in your state and get in touch with them and ask for an evaluation to go over your concerns.  Take the ASQ (Ages and Stages Questionnaire) and talk with your doctor about the results (Oregon has this great little website that actually gives you an idea right away how your child is hitting milestones.

Taking the test (which our doctor's office sends in the mail before checkups) helped me articulate to James' pediatrician exactly what my concerns were, when they were just forming in my head.

If you're wondering if your child might be on the spectrum, take a look at the MCHAT and then print out the results and take them with you to your appointment.

You see, there's a good chance that there's nothing to worry about.  But there's also a chance that your child might need a little extra help, or a lot of extra help.  And getting that help early can be life changing.

So if you have a concern, an little annoying fear that you can't shake, don't be afraid to ask questions to find out if there is something going on. Chances are it's that everything is within the range normal.  And if it's not you'll be on the road to getting answers and getting help.

I read a statistic a while back that said that children who were born to families that already had a child on the spectrum, were something like twice as likely to receive therapies like OT and Speech than families without kids on the spectrum.  This doesn't surprise me at all.

As a parent of a child on the spectrum I know that I've become immersed in developmental milestones.  Sometimes I find I have to be careful to actually really enjoy a moment and take in what's going on, otherwise I'll find myself excitedly checking off boxes in my head, and saying "Oh, functional play! Imaginative play! Check and check!"

I think that has probably been strange for Patch's and James' therapists since I can often list off the key developmental accomplishments they've hit, but can't remember what the actual specific activities were where they made those accomplishments ("Um... I know he had some good imaginative play!  Because I thought 'Oh look!  Imaginative play!"  But I can't remember what it actually was that he was doing....").

I have to write down notes of key moments so I know what I need to remember to tell each therapist.
Which brings me to another big tip for these types of appointments.  First, call and schedule and appointment.  And then, in the time you have between now and the appointment, write down your concerns.

It might not be a lot.

Or it might not seem like a lot until you start writing.

When I went to meet with a social worker before Mae's first ADOS, I compiled a list.  When she asked me what my concerns were I pulled out the list.  I hadn't thought there would be all that much but an entire piece of paper was covered.

If you have a concern, trust those instincts and ask questions.  If it's nothing than hopefully you'll be able to find answers that ease your worries.  On the other hand if there is an underlying issue, you'll be able to move towards getting your child help as soon as possible, whether it's just a little extra help to overcome issues that might have grown into greater stumbling blocks, or larger issues that will require more long term help to face.

Knowledge is power and knowing what's going on can give you the key to begin to learn how to help your child grow and learn more effectively.  And it will hopefully give you the peace of mind that searching for and finding answers to those nagging little doubts can bring.

1 comment:

  1. Thank you for writing this post. It was very helpful. As parents we all want what's best for our kids, but sometimes it's tough to sort out the best course of action. I totally agree, the earlier the better. Your kids are lucky to have you for a mom :-) also, I hope your feet are healing up.


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