22-month speech update

A lot has happened, and not happened, in the past month. To recap, our 22-month-old son isn’t talking. We’re still waiting.

Insurance doesn’t cover developmental delays, but our state has a network of regional offices that will help any parent with these issues through age 3. Great, right?

Two specialists assessed our son. The office held a case conference to review its latest applicants and at that meeting – which we were told we could attend, but that it wasn’t necessary — our son was denied treatment.

It turns out a behavioral expert said our 20-month-old son’s speech was at a 6 month level. A speech pathologist said his speech was at 14 months.

Yeah, umm, we filed an appeal and requested a reevaluation by a different speech pathologist.

Photo of my son inside a big cardboard box opening a door in the box and looking out while he is actually perched atop an even larger cardboard box.

Ding! Our retest was approved, this time using a pathologist we’d started seeing and paying out-of-pocket while this bureaucratic nonsense dragged on.

In our re-test at 22 months, our son’s expressiveness ranked equivalent to a 10-month-old. Mmm hmm. We were right, thankyouverymuch.

But, there was still a problem. We began to understand state law and how it seemed stacked against us.

Our son needs at least a 33 percent communication delay to be found eligible.

His receptive speech is normal, meaning he understands what we say to him. However, in the reevaluation, his expressive speech was more than 50% delayed.

So, we’re eligible, right? Wrong. The office folks are probably going to combine his super bad score with his good score, producing a figure below 33 percent – finding him ineligible.

That’s what they did the first time, and that’s what they’ll probably do again. Our reading of the applicable state law made us feel screwed.

Then, the week before our hearing, my uncle got us in contact with a friend who works at a different regional office, a person whom I’ll heretofore refer to as the Super Savior from Far Away (SSFA).

The Super Savior was confident the state department that handles all of this stuff was on our side.

We learned we “may,” but not “must” be found eligible. The office is allowed to selectively consider my son’s horribly delayed speech and provide treatment.

Super Savior thought our local office might not be up-to-speed on the latest official interpretations of the law.

Wow, well, that was news to us. We now had an argument to make at the hearing. We would let them know that we know it’s within their power to grant us eligibility.

When I spoke to the office a few days later, I might have even *cough* said something about it.

Oh, but it gets better. Our Super Savior’s boss, whom I’ll refer to as Far Away Super Person of Amazing Kindness (FASPAK), knows someone at our regional office very well, and would be seeing said person at a meeting the day before our hearing.

And, FASPAK would be more than happy to clarify the issue with the person from our local office. I wonder how that conversation went.

Anyhow, fast forward to the day of our appeal. My wife and I both plan to attend the hearing. We have our son with us too. We have our arguments prepared. We have specific issue-clarifying statements typed out to use in defense of our son. We’re ready to rumble.

The person who greets us in the waiting room to escort us to the hearing mentions, on the way, that our son has been deemed eligible.

Uuhh, say what? Booya! We fought the law, and we won.

The hearing itself had a brief review of the test results and friendly discussion of our son. We set up an appointment to process paperwork, and pfffft, that’s was it.

Now, not to make this sound purely like an intervention by two Super People, there is a technically plausible alternate explanation.

Namely, our first speech pathologist ranked our son as being at a 14 month level, but two months later—with still no speech progress made — a different pathologist ranked him at 10 months, in closer agreement to the original behaviorist who thought he was at a 6 month level. They seemed interested in there being a full year’s difference between his receptive and expressive skills.

Maybe they just thought, yeah, the kid has a serious problem after all. Maybe not. It was just nice to not feel helpless when dealing with a state agency.

(Talk to me some time about my wife’s employer—a hospital no less—expecting her to return to work 2 weeks after our son’s birth, despite state and federal laws that seem to guarantee family leave time. That was an expensive grievance to pursue, and lose.)

But ya know, I don’t even care anymore. We’re finally going to receive some degree of counseling aside from the one specialist we’ve been paying.

Now, as for our son’s actual progress… he’s still not talking. He says “Mama” now either to refer to anyone in a time of distress, or to make chatter.

In some cases we’ve been able to coax “Papa” out of him, or “Mmm” (moo – we’ve been practicing animal sounds)… but it’s a rarity, and has always been in response to a question. He exhibits no desire for verbal communication beyond pointing and grunting. He makes no pretend sounds when playing.

We’ve begun learning sign language, having limited success with “more,” “eat,” and “please” – words expressed around the dinner table. There’s a direct causal relationship possible where he asks and receives. It’s still a mostly prompted occurrence, but he has reached out to us through sign a few times.

That’s where we are now, in a verbose nutshell. To be continued…

Comments

14 Responses to “22-month speech update”

  1. adrienne says:

    Back in our pre-kid era, we periodically babysat a child with similarly good reception and low expression. I must say, the child was rather brilliant socially and didn’t view language as necessary for communication. She could tell people what she wanted most of the time with gestures and expressions. She was a second child with a rather verbose older sibling.

    Sign language and (state-provided) speech therapy really worked for her. I’m pretty sure she’ll always be at the top of her class.

    It sucks that you had to fight so hard for this. I admire your perseverance.

    January 29th, 2010 at 7:43 am

  2. Angelique says:

    Isn’t bureaucracy fun? My oldest is profoundly gifted and also has mild to moderate Sensory Integration Disorder (relating particularly to gross motor skills). The whole being “profoundly gifted” part has screwed us on any treatment options covered by insurance, state or school district. When evaluated, he gets perfect scores on cognative reasoning and fine motor, then bombs the gross motor. They take an average of the scores, so he ends up with a passing score and no aid. And they love to let me know that “you know, he’s probably a really gifted little boy! He got some amazing scores!” To which my reply is, “Yes, but don’t you see that among other things, he can’t skip, pedal a bike with training wheels, do a push-up or sit-up, run with his hands down, or catch a ball???”

    I wish you the best of luck navigating the red tape.

    January 29th, 2010 at 8:35 am

  3. kym says:

    AJ,

    Its tempting to tell a story about a child I know that didn’t talk until he was 4 and then began speaking, one morning, in complete sentences. But, having my own son who is outside the norm, I know that trying to hold onto those kind of ephemeral tales and wring some comfort from them is pretty futile when I am struggling with the day to day reality of my own child. Oddly, (and its not something I’m particularly proud of) I found just knowing that other people were also struggling and surviving and finding their own peace comforting. In case this is true for you, I send you my thoughts and a hug for your little guy.

    January 29th, 2010 at 9:24 am

  4. Maria says:

    Our daughter sounds fairly close to your son. She is 20 months and only said da (for daddy or really any person in the room) up until last week. She really HATED when I tried to get her to repeat something I said, but she would repeat sounds music or books made. Press the cow button and she would MMMMM along with it. Never just on her own or when asked. She does sign about 10 signs, but didnt just them too much until they were for things she really wanted. Once we taught her cookie (which she signs for any treat) she really figured out quickly she could use them to get snacks when ever she wanted. The down side to that is that I was so excited she was asking for something that she ate a million cookies last month. :-)
    Last week I went to get her out of her crib. I asked her to say up. Nothing as usual. I kind of sat there with my arm out telling her to say it. About my 10th time to ask she finally uttered BA. I got her out, clapped told her she was good. Now she regualarly is saying Ba for up/down or in/out. That started a chain last week. She has what I say are 7 words (about as close as BA for up but they are consistent so I know what she means). Hoping things progress from here. She has her appt next week to be evaluated…We’ll see how that goes. Congrats to you on your recent success. Keep us posted.

    January 29th, 2010 at 9:28 am

  5. MoJo says:

    Congrats on not giving up and getting the help your son needs! I hope it works as well for your son as it did for ours.

    January 29th, 2010 at 10:23 am

  6. Monique says:

    Hang in there AJ! I applaud your persistence! How about the local elementary school –ours has free speech for preschool age beginning at age 2. They allow 30 minutes of speech twice a week for free until speech issues are resolved.

    January 29th, 2010 at 1:07 pm

  7. observer says:

    congrats for winning the ratrace that they put you through. hope this therapy helps him gain more skills in talking

    January 29th, 2010 at 2:51 pm

  8. AJ says:

    Thanks everyone.

    Kym, yes, I no longer take relief in anecdotal stories of kids who have a similar impairment and then one day turn out perfect. One person at the hearing mentioned the Einstein-didn’t-talk-until-he-was-two story and that kind of made me bristle.

    The sad truth is that I take relief in the fact that other parents are having a harder time than me. The various times we’ve been in that agency’s waiting room, I’ve observed how much more of a struggle we could be having right now if the impairment was more severe. It definitely makes me want to volunteer for one of the nonprofits that serves these parents. They have to be among the strongest people anywhere.

    January 30th, 2010 at 1:01 am

  9. anjii says:

    AJ, I totally understand what you mean about not being comforted by anecdotes… Dawson is now 28.5 months old, and JUST hit 20lbs. He’s doing a bit better with height, but still never been close to zero on the “chart”. Everyone keeps telling me, “Oh, he’ll catch up! I know this preemie that ended up being 6′ tall!”, etc…. and while it’s true that “most” preemies catch up by age 3, IUGR babies like him are basically a crap shoot, and there’s no way of predicting if/when they’ll EVER reach their genetically intended size. At this point, all I’m hoping for is that he’ll be “regular short” like me and my hubby, rather than tiny short like he is now, before school starts. Partly for the obvious reason of not wanting him to be picked on, but even more for the reason that I don’t want people to treat him like a baby, and then have him act accordingly. That’s my biggest fear, and I’m already seeing it happen! (Sometimes even with me, despite me best attempts at avoiding it)

    January 30th, 2010 at 3:00 am

  10. P.A. says:

    AJ,

    Congrats on your persistence. Your situation sounds exactly like ours did 2 years ago. Our therapist had to write a special letter detailing why the combined speech score should not be used (based on the difference between the receptive and expressive) and we got services too. The people we have met on this journey (most of them) have definitely been the silver lining!!

    Let me throw out a term to you that has been thrown at us–apraxia. Perhaps someone has mentioned that to you, but it is a totally different ball of wax than a pure speech/language disability (my very layman’s take on it). Not at all suggesting that is what is going on…It is hard to know in some of the younger kids, so just put it in your back pocket in case someone brings it up out of the blue like in our case. Best of luck to you. I appreciate your perspective on this issue! I also tire of people blowing me off by offering unrealistic anecdotal stories. I generally assume that with those stories, the success is actually based on countless hours of therapy, driving to and from, exercises at home, and meetings meetings meetings. I’ve rarely had another PARENT tell me a miracle story…it is usually an observer who would have no clue about (or memory of) what went on behind the scenes.

    January 30th, 2010 at 6:19 am

  11. My Boaz's Ruth says:

    *shrugs* parent here. I know that we were considering getting my son evaluated for exactly what he describes — very good receptive but didn’t have the expressive. We kept talking to him, sure. But we didn’t do anything special (Except wish we had done more sign language when he was younger) and our son just started talking more, on his own, right before Christmas. Enough that it no longer felt right getting him evaluated. and he’s continud to do so.

    Both my husband and I were late talkers, and it just feels like my son started talking on his own timetable. I was just impatient cause so many of those around him (his own age and younger) did it faster.

    Yes, he’s probably still behind. But not NEAR to the degree he was before and he’s catching up fast. He recognizes most of his letters, likes counting (though he skips seven a lot.) and some sounds still are not clear. But he’s getting there.

    February 1st, 2010 at 5:04 am

  12. Dani says:

    Good luck with all the therapy. Our son was a preemie and amazing hasn’t had any language issues but at 4, still can’t jump, run, reliably get himself dressed or do a whole host of gross motor issues. He gets PT and OT but it was a struggle. Your doing the best thing you can. Be an advocate for your child and DON’T stop pushing until you get the services that are necessary. Hope it all goes well for you!

    February 2nd, 2010 at 8:03 am

  13. Dallas says:

    AJ, I sent you an email, from the email address entered above, with some information regarding a book I’ve been reading. Good luck.

    February 3rd, 2010 at 12:03 pm

  14. Cathy @ Chief Family Officer says:

    A close friend whose son is autistic seems to be in a constant struggle with LAUSD over the treatment the district will provide. It just plain sucks that you have to fight so hard, but her son and your son are both lucky to have such loving, dedicated parents who will do anything and everything for them. I look forward to your post in a few years saying you’ve been able to close the chapter on this book!

    February 4th, 2010 at 9:47 pm

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