The paperwork has been sitting on my desk for three weeks now. I can’t do it.
All those forms that I need to complete if I want to get Lewis evaluated by the team at the Center for Children with Special Needs…they are still blank. I can’t fill them out.
I started to – I really did. When we got home from the appointment with Howie’s developmental pediatrician (remember her? she called me “Super Mom“?), I sat down at my desk with the stack of forms she gave me. It was the quickest way to get in to see the speech/language pathologist, she told me, since we were still concerned about his speech delay. And it couldn’t hurt to have a full evaluation, could it?
So there I sat that afternoon, pen in hand, ready to answer all those questions again, just like I did a year ago for Howie.
But then my eyes glanced down to the bottom of the page. “Please include a picture of your child here.”
I stopped. I put the pen down. And blinking back tears, I walked away.
That was three weeks ago. Right now, those forms are staring at me as I type (ok, they are actually under a pile of blue paper snowflakes, but they can still see me and I can see them…)
I can’t fill them out because I don’t see it with Lewis.
I’m going to try to explain what it is.
Here’s what I don’t see: I don’t see the long, protracted meltdowns that seem to go on forever. I don’t see the impulsive behaviors and the inability to control them. I don’t see the feeding issues, the sleep issues, or the motor planning issues. I don’t see a child uncomfortable in his own skin. I don’t see a child desperately trying to interpret the world around him.
Here’s what I do see: I see empathy. I see pretend play. I see a child who can feed himself, undress himself, and sleep through the night unassisted. I see the ability to hold a crayon and do a puzzle and transition from one activity to the next without a tantrum.
It was the complete reverse with Howie. All the things I see with Lewis, we didn’t see with Howie. And all the things we worried about with Howie, we don’t with Lewis.
That’s the it, I guess. I don’t see the autism.
And that’s why I couldn’t put his face on that form. Because I’m not sure it belongs there.
This is not to say that I’m not seeing things that worry me. I still see a child who understands everything but still has a very hard time expressing himself and that gap concerns me. Lewis is very shy and won’t talk at all to anyone he doesn’t know.
There are some sensory issues too – he has a fit if his socks aren’t just right and would be happiest staying in his pajamas or not wearing any clothes at all. This sensory avoidance stuff is very familiar, though. Throw in a hatred of turtlenecks and a fear of touching cotton balls and this kid is…me.
So long story short, I don’t know what to do.
I do think he needs to see a speech therapist again for another evaluation. We’ve come a long way but I don’t know where we really are in the grand scheme of all-things-speech. If I fill out those forms for the developmental evaluation, we could see someone quickly since this particular clinic takes the youngest kids first. But I can’t get past the fact that in my heart I feel like we’d be wasting all the other doctors’ time – that we would just be going there to get a faster speech eval. I can’t stand the idea that we might take up an appointment time that we don’t really need. We could use up a spot that could have gone to some other family – one desperately seeking answers and help. A family like just like ours, only one year ago.
But what if I’m completely wrong? What if I’m not seeing it because I don’t want to see it again?
Would I be so quick to give up my spot on the appointment list if this was my first child and not my third?
Sigh. Parental guilt. Never ending.
I do know one thing. The speech pathologist from Early Intervention will come back in February to test Lewis when he’s 2 1/2 years old. She promised she would. I’ve already called her and left a message to set up an appointment.
And for now, I think I’m going to stop there.
I’m trusting my gut on this one. If I’m wrong…if I’ve missed something…
I’m keeping all that paperwork on my desk. Just as a reminder that it’s there, waiting for us, if we need it.
“Sometimes I think I know too much
’bout what goes on in the real world and such
Half of me is certain, the other isn’t sure
One half has the symptom, the other has the cure…
It’s a fine line, a very fine line
Split decision
It’s a fine line, a very fine line” – Split Decision by Steve Winwood
December 15, 2010 at 7:18 am
Oh honey can you feel the hug from here? Cause it is a big one and a tight one at that! Our gut, the second brain as I like to call it, is our best indicator of what’s wrong/off/not right. So trust your second brain, I mean gut, and relax a bit. You have the SLP coming back in February, and if she doesn’t call you back in January, call again, or let me call for that matter!
You rock and your husband rocks, the whole family rocks!
December 15, 2010 at 7:23 am
thank you
It’s hard to trust that second brain but you’re right. as always.
December 15, 2010 at 7:29 am
I’m frequently amused by the very similar paths our lives take. We have an appointment for Cubby in January with our dev. ped. It seems a little like overkill with the sibling study and EI. I’ve felt the same way as you, but I think I’ll email her to get her opinion before cancelling. It would be at least another 8 months before I could get another appointment, and we’d perhaps be gone by then!
And that just made me realize how imminent our move is. I think I might be coming down with mild anticipatory anxiety too.
See? Parallel lives!
December 15, 2010 at 7:45 am
it’s is a little eerie how alike we are…do you hate turtlenecks and cotton balls too?
December 15, 2010 at 8:27 am
I all kinds of hate turtlenecks, from both a comfort and fashion perspective. Cotton balls are mildly annoying. I’d never buy them myself, but I can live with them if I’m visiting somewhere and there is no alternative. The question is: who actually likes cotton balls? Who would find them a superior alternative to the pad?
December 15, 2010 at 7:50 am
Here’s what I think. When you have one with asd, or any disability for that matter, you end up being on red alert with the other kids. Its hard to know what is normal and what isn’t. I look at some of the things my nt son does and wonder, should I have him evaluated for something? He covers his ears when the toilet flushes (but loves fireworks), everything needs to be just so (but he’s 4 and most kids are ocd at that age). He asks me the same repetitive questions (but he talks nonstop and most kids are annoying with the questions). He plays with his ears for comfort (but its a soothing thing, like thumb sucking, and not a stim); etc, etc. Its easy to look at things and think they are red flags, but really all kids have their quirks. Its just the severity of them that matter.
I think there is a thing as over-evaluating, too. But I say do whatever makes you feel comfortable. Just remember no child is 100% “normal” and follow your gut.
December 15, 2010 at 8:11 am
thanks Jen. It really helps to hear from other parents in the same situation as we are.
December 15, 2010 at 8:49 am
Trust your instinct. You “know” the right answers just as you “knew” last year to push for an eval for Howie. And spectrum stuff runs in families, all three of my kids (and both J and I) have spectrum type issues, but we don’t have that magical combo that adds up to ASD (Only Jett is *that* lucky).
And just to put it in perspective, lots of kids have speech delays and catch up at 3 or 4. You just know that scary end of it. You know first hand about having a child that it’s not just a delay. So of course you worry.
So really, this is just a long way of saying I think you are doing exactly the right thing. You are educated on the issue, and believing in what you see every day.
I believe you know exactly the right actions for you and your family
December 15, 2010 at 9:38 am
thank you. I think you hit it – whether or not he has that magical combo. I don’t see it…yet. I appreciate the insight and support!
December 15, 2010 at 9:02 am
I echo all the other supportive comments – esp follow your gut (really inside your primary brain).
The split-decision title made me think your Hubby differed with you on this issue. Now I see you are torn within yourself. I see no problem with waiting based on your (gut) feelings that a comprehensive eval is overkill for what might be a speech/language issue. Looks to me like a comprehensive developmental eval for Lewis is like a cotton ball to you. Avoid if you can; deal with it as best you can.
I encourage you to not spend too much time in guilt over wasted time of others (evaluators) – your time is valuable, too.
December 15, 2010 at 9:41 am
Interestingly enough (or should I said luckily?) my husband and I seem to be on the same page about most things, so most of my conflicts are internal. How I don’t have an ulcer I don’t know
I love your analogy of the cotton ball and the eval. that’s perfect
Thank you for reminding me that all of our time is valuable, and for the advice as well.
December 15, 2010 at 9:20 am
I agree, and have always said, that no one BUT NO ONE knows their kids as well as Mom, and as moms we should go with our instincts. You know in your heart the right thing to do, and you’ll always do what’s best for your children.
That said, I also agree with Ms. Boucher that your time is just as valuable as everyone else’s and if you eventually decide on a comprehensive eval, you should not feel guilt regardless of the results. Also, just keep in the back of your mind that it looks different in all of us. Here in THTAB all four of us have it, but it manifests differently in each of us.
But AGAIN, just like Jen says, no kid is 100% normal and YOU KNOW what your kids need better than anyone else on the planet.
(((hugs))) You’re doing the right thing. Trust your instincts.
December 15, 2010 at 9:42 am
you are one smart lady. Thank you. I think the eval will and can always be there if/when we think we need it. I just don’t know if now is the time.
December 15, 2010 at 10:09 am
It is never-ending. And sometimes we just have to sit with it. Hello, guilt! You brought your friend, uncertainty? C’mon in.
December 15, 2010 at 1:52 pm
table for three?
can guilt at least pick up the check? It owes me that much…
December 15, 2010 at 2:07 pm
Trust your instincts. I erred in the opposite direction with my son when he was very small. I *knew* what I was seeing but listened, instead, to “the experts” about how he’d catch up. It’s now five years later and my nonverbal boy is finally in a special program after three years of homeschooling. I will always wonder what he might be doing right now if I had completely trusted myself and pushed for what I knew he needed.
You know your children and you know what you sense and feel, trust it.
December 15, 2010 at 6:41 pm
thank you for your honest response, as always. we waited as well – listened to the doctors instead of our heads – and I do the “what if” game sometimes too. I’m afraid of that happening here too. But you’re right – we know them best and have to go with what feels right. Thanks
December 15, 2010 at 2:36 pm
[...] This post was mentioned on Twitter by akbutler, akbutler. akbutler said: Do I get my youngest evaluated for #autism when I don't see it? Split Decision: http://t.co/sA9TbcH #parenting #parentalguilt [...]
December 15, 2010 at 3:04 pm
I came here to the comments section to say, “Trust your instincts.”
Clearly I was not the only one.
I haven’t commented or blogged in a long time, and one of these days I’ll post about why that is…but seriously, you’re the one who knows your kid, and you’re more equipped to make this particular call than anyone else.
And there’s nothing to say you have to rip up the forms and throw them away. And like you said, it’s not just a question of “fill them out or don’t fill them out”…there’s also “wait and see.” If at any point your inner Mom-alarm goes off, you can fill them out then. Wait and see. And trust yourself.
Hang in,
Jenn
December 15, 2010 at 6:39 pm
thank you. Mother knows best, right? except when mother is wracked with guilt about the whole thing
December 16, 2010 at 9:46 pm
Naah, she knows best then too.
December 15, 2010 at 9:09 pm
Good luck to you. It’s so hard to trust your gut sometimes. We’re in the midst of diagnosis and intervention craziness ourselves right now. It was hard to fill out that information. Obviously you know it’s the right thing to do. You just have to remind yourself that you’re doing this for very different reasons this time and that different is ok.
December 16, 2010 at 1:14 am
Once those damn autism goggles permanently attach themselves to your face, you never view ANYTHING in the same light as before do you?!
All I can say is :trust your instincts,you are the absolute best Mom for Lewis, trust in what you do and and don’t see and you are doing all the right things.
You know that no matter what the final outcome is that nothing will change your love for him.
Diagnosis is really just a label thats only useful for accessing services. (well thats how I look at it anyway).
x
December 16, 2010 at 5:06 pm
I only have one child, so I have absolutely no advice to give you, but I can see/understand where you are coming from after reading through this post. Nothing is ever easy is it?! I will echo the “go with your gut” thought though!
December 18, 2010 at 8:52 am
I agree with everyone: trust your gut. I recently spoke with our pediatrician about Tommy, my toddler. I was worried about vaccinating him because of the whole autism scare. Plus, the dev ped said he has a 1 in 20 chance of developing autism since Danny has it.
I don’t know if I believe vaccines cause autism, but it still scares me.
Anyway, the dr told me that I would know if Tommy were showing signs of autism, even at this young age. She said us moms of kids with autism know what to look for and that I should trust my gut. I’m pretty sure she would tell you the same thing and she is the BEST pediatrician out there.
And she’s right–Tommy is so much more social and interactive than Danny ever has. Now, I do see some sensory signs that trouble me a bit, but I figure well, if he has SPD he’s in good company since his other two siblings have it.
And I have to say one thing: Danny had speech delays, but I totally believe it was due to the SPD, not the autism, because almost as soon as we started OT, they started clearing up. At that time, he didn’t even have an autism Dx, so just remember that speech delays can be caused by other things, and sometimes can just be normal glitches.
Good luck, and if you ever need to talk, I’m here!
December 19, 2010 at 12:58 pm
Yeah..trust your instincts Alysia. Mom does know best! And you’ve kept the door open with the Speech pathologists appointment which is a very good idea.
You do know Lewis best but can I just suggest something in the hope I’m not stepping on toes??
Perhaps Lewis is just on a different level of the Spectrum?? A very “mild” level?
I know it must be so hard to be going through this again. I too balked at sending my WiiBoy to his evaluation years ago because they used the term “Mental Health for children”!! Totally freaked me out!
The main reason I make this suggestion is because of my WiiBoy. You know how great my guy is doing through reading my blog. he’s on the spectrum and is now diagnosed with PDD-NOS. He also has another diagnosis from our previous SLT…. a SEVERE EXPESSIVE LANGUAGE DISORDER!!
Hard to believe I know (he never stops talking!!)There was quite a gap between his receptive and expressive language. I believe it has lessened over the years but is still there.
And look at him now
I’ve no doubt things will work out for you.
Stay strong!
((xx)) Jazzy
March 11, 2011 at 1:36 pm
[...] took me a long time to send in the paperwork. I couldn’t put Lewis’ picture on the forms. I couldn’t go through it all [...]