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Special Needs, The Second Time Around

Aug19

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Advice Smackdown ArchivesI was so happy to find your blog years ago because the situation between Noah and my oldest started out very similarly. Same age, same EI (Early Intervention) system, same issue of ‘you’re all caught up, let’s graduate you out prematurely’.  I spent the next years fighting and failing to get back into ChildFind and paying out of pocket for private ST/OT (speech therapy/ occupational therapy).  I am angry at myself that I was so happy when they told me she didn’t need the help anymore because no one had even begun to understand my daughter’s issues back then: they’ve only started to become clear(er) as she’s gotten older.  I’m also mad that I didn’t speak up more when I wasn’t happy with the county therapist who spent entire ST sessions telling me what a great kid I had instead of actually working with her.

 

SOOOOO, I have an 18-month old.  She seems very “normal” otherwise (ha, what’s that?) but only has 1 word (at this age the older one had 6 at this age including animal sounds).  We have our intake meeting tomorrow.  All of this is a VERY long way of asking how do I not repeat the mistakes I made the first time around?  God, I made so many.  I feel like at every turn that I will never believe that what they are doing is right and that any issues we see now are only an initial glimpse into some full blown diagnosis that will only reveal itself in years to come well after the county believes my kid needs help/my insurance would cover a dime of it.  I shouldn’t start out by yelling at the intake people, right?  

R

Argh! Argh argh argh. I am so sorry to hear that Our Fabulous System let you down in such a similar, spectacular fashion.

(Quick catch-up sheet for any Smackdown readers who may not be familiar with what R is talking about: My son Noah was evaluated by Early Intervention at just-under-two for a speech delay. He did very well in speech therapy, not so hot with occupational therapy, thanks to a not-great therapist and my inexperience with advocating/speaking up. I agreed to end all services a couple months before his third birthday, when he would have then been evaluated by the school district, because he was doing “so great” and it was assumed he’d catch up on his own and do just fine in a mainstream preschool. Instead, he regressed and cratered and his “quirks” began to resemble something on the Autism Spectrum. It took months to get the evaluation process underway again because once you exit the system, you have to start all over. [Not to mention that I first contacted his former EI case manager when Noah's teacher threatened EXPULSION, and she STILL maintained that Noah would not qualify for anything, because he was FINE.] Luckily, the district agreed that Noah desperately needed services and put him in the Preschool Education Program. He spent two years there and is now starting public kindergarten with an IEP (Individualized Education Program) and services in place. He’ll be about 70/30 in special ed/mainstream to start. We have also continued to supplement his treatment [which is NOT Autism after all, but Sensory Processing Disorder with a likely side of ADHD] with private therapies, summer camps and one year at an obscenely expensive but extremely wonderful special-needs-only preschool.)

(Whew. That was maybe not as quick as I promised. Sorry.)

Anyway, I have not yet had to encounter a do-over with another child — Ezra is almost shockingly verbal, the epitome of the “where does he GET this stuff” kind of kid. Though of course, it took me forever to actually relax and unclench and stop LOOKING FOR SIGNS AND THINGS in his development, and once I managed to accept that he really is truly “typical” (whatever), I went and had another baby that I could stare at and study and worry about. (Ask me about my paranoia over how much Ike LOOKS like Noah!)  But I still had to work through many of the feelings you’re describing: namely, anger and blame at myself over “mistakes.”

I took the therapists’ word for it when they said Noah was fine. I didn’t fight them on the OT concerns. I didn’t understand how important that three-year-old transition process was, or that I should have made sure Noah went through it. I chose the mainstream preschool he attended, I took their word for it that they understood SPD (HA. HAAHAHA.), I waited too long to contact the school district, and on and on and on it goes from there.

Here’s the thing: You have to forgive yourself. Full stop.

Technically, sure, none of those “mistakes” were 100% my fault: I trusted people I thought were experts, people I thought knew more about Noah’s condition than I did. But that line of reasoning/outsourcing blame only goes so far when it’s about YOUR CHILD. You feel like you should have known better, done more, done SOMETHING ELSE. So…mentally put a little asterisk after the “I made so many mistakes” phrase in your head — an asterisk that contains all the stuff about trusting the wrong therapist and what you’ve learned in 20/20 hindsight — and just try as hard as you can to cut yourself some freaking slack and forgive yourself. You did your best. You did what you thought was right. 

And that’s all you can really promise to do for your second daughter, now. You will do your best. You will do what you think is right. 

Tell Early Intervention your story. Tell them what happened and how frustrating it was — as calmly as possible, of course — and tell them you hope for something more open and collaborative this go-round. Admit that you’re a little gun shy, particularly when someone starts with the effusive praise about how GREAT she’s doing, and while you want nothing more than for that to be the truth, you will probably need some extra convincing that it isn’t just a Band-Aid covering up a larger, lurking problem.

That’s what I did, and have done, at just about every important evaluation and meeting since, public or private. I’ve been honest about What Happened At EI and What That Meant For Us And Noah. And while yes, it HAS been a blow to realize that Noah’s speech delay really was a gateway diagnosis to stuff we will probably be dealing with and worrying over for many, many years to come, I also realize that where Noah is now is NOT BECAUSE OF WHAT HAPPENED AT EI. Not anymore. It sucked for awhile, and then we course-corrected. We got him in the programs he needed — even if we did end up paying a ridiculous amount of money for them, thaaaaanks insurance! — but…the layers of the onion were going to get peeled back anyway, two years of PEP (Preschool Education Program) or three years of PEP, early OT or one-year-later OT. Nothing he missed out on was a “cure,” you know?

Noah doesn’t remember the preschool he attended that made all of our lives so miserable for all of nine months, back when he was three. We drive by the building and he has zero recollection of going there, and it had no effect on his ability to enjoy school later, and now. Perhaps, if we had stayed in EI and gone through transition testing, the district would have been overly and incorrectly swayed by the EI staff’s glowing reports and praise about Noah’s progress, and we would have ended up in a mainstream school ANYWAY. And then maybe unable to get him back in, because the district would have weighted their own initial decision when we came back later, in complete desperation. And I can’t imagine our lives without the private camp and school and therapy we’ve gotten (and continue to get) at The Treatment and Learning Centers. (I’ve never named them outright before, but hey, if you pick up those free Washington Parent magazine things and pay attention to the ads, you’ll probably spot Noah’s photo eventually.)

Anyway, sorry to ramble so much about OUR story, but point is: Your story probably does have similar zigs and zags that maybe — just maybe — weren’t the Total Miserable Failure that they felt like at the time. Or even now. It wasn’t your fault, maybe it wasn’t even that speech therapist’s fault. Everybody did their best and did what they thought was right, even when it wasn’t. I still, honestly, DO have residual anger at a lot of the specific people we’ve been failed by in the past. (While I believe Ezra would have LOVED Noah’s old preschool, I was unable to even surf their website for admissions info without starting to shake, so we’re obviously sending him elsewhere.) And it was only by forgiving myself — since I was the common denominator in all of those less-than-great experiences — that I was able to move forward and start fresh and trust that the new batch of teachers, therapists and evaluators had Noah’s best interests at heart. And together we would all do our best, and do what we feel is right for one wonderful, challenging and ever-mysterious little boy.

Photo credit: Thinkstock

About the author

Amalah

http://www.amalah.com
Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy's daily mothering adventures at Amalah. Also, it's pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.


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4 Responses to “Special Needs, The Second Time Around”

  1. Mouse Aug 20 at 12:56 am Reply Reply

    I agree 100% with Amalah that you have to forgive yourself.  Also, your #1 best defense to making sure you avoid a similar experience is the fact that you now know about the particular obstacles from the first one.

    We had “experts” dismiss our concerns about our older son for 2.5 years.  It took another 2.5 years after we found people who would listen to get the Asperger’s diagnosis.  With our younger son, we’ve been hyper-vigilant and spend a lot of time discussing his development in view of his brother’s issues.  I figure there’s no way we’ll miss that side of things–it’ll be a whole different set of “mistakes” and road-blocks and such this time.

  2. jennifer Aug 20 at 5:40 pm Reply Reply

    The folks at TLC are goddess who work incredible magic with their patients.

    We also had a virtually kicked out of school child and please don’t come back but we’ll keep your deposit anyway situation and were able to mainstream with OT thanks to TLC. We’re down to once session a month to keep him on track.

    Insanely expensive, my insurance just laughs at me and I don’t really have any retirement funds but my kid is thriving…

  3. S May 31 at 3:04 am Reply Reply

    I’m there. 2.5, everyone thinks she’s fine. SPD is ugly. Can you tell me about what the future holds? Obviously not, I know. I’ve been asking that question since the first failure to thrive newborn diagnoses. But how about what your age 3+ experiences were? What were the behaviors and regressions that got the district back on board?

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