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Don't Want The Cup! - Karen's Musings
Random Rambling
Don't Want The Cup!
In August, we had the triplets' speech/language assessed on the Mullen Scale. It's not perfect, but we knew that, at the very least, it would give us a point of comparison for the future. This had been suggested by J-man's developmental pediatrician because each of the triplets were showing significant delays in expressive language and also in receptive language skills - especially Sam.

When Sam was about a year old, he responded to his name consistently. If you said his name from across the room, he'd turn toward you, make an odd little grunting noise, and wait to see what you were going to do now that you had his attention. This was a really positive sign. But by his fifteen month check up, he wasn't babbling, he wasn't talking, and he had stopped responding to his name at all. This kind of regression is often a huge red flag for ASD, but he had no other red flags. He made eye contact, he was sociable, he was cuddly and loveable, he was engaged - but this language regression was... troubling. I actually hadn't been too alarmed until their pediatrician told me I should really consider having their early intervention team assess all of them, particularly Sam, for speech/language issues. As it happened, we had already scheduled that assessment on the advice of their developmental therapist, but the fact that our normally very laid-back, very "let natural development happen when it happens" pediatrician felt like there was reason for further investigation did alarm me.

To qualify for early intervention through the county, a child has to display, at a minimum, a 25% delay in a developmental area. My kids had been receiving various services through early intervention since they were six months old, so it was easy to get a speech therapist to come out to let us know what she thought. Sure enough, all three qualified - without any calculating necessary. None of them were babbling, none of them had any words, none of them understood even simple directions, and the girls were only occasionally (and possibly only by chance) responding to their names, and Sam wasn't at all. They started speech therapy a couple weeks after their assessment.

The girls grew by leaps and bounds, though still far behind their age level, but we continued to see Sam lagging behind. He's not dumb, that much is clear, but it was also clear that he was really struggling in the communication department. Since we already have an excellent developmental pediatrician for J-man, at one of our appointments with him, we asked for a few minutes of his time to talk about the triplets, after we'd finished talking about J. We explained where the triplets were developmentally in terms of overall milestones, and more specifically in terms of language development. He recommended that we have all three of them evaluated using a standardized scale - not so much because the scale is so telling, but because it would provide a frame of reference - another data point, though obviously not the only data point.

In August, when they were 23 months old, we had the speech therapist evaluate them using the Mullen scale - again, not a perfect evaluation tool, but a reasonable data point. The girls, not surprisingly, tested about 6-10 months behind their expressive and receptive language skills. Behind, yes, but definitely making progress. Sam's evaluation was sobering. His evaluation assessed him as having the expressive language skills of a 4 month old and the receptive language skills of an 11 month old. We were alarmed, but continued to be cognizant of the fact that this seemed to be his only truly significant area of delay.

We increased Sam's speech therapy from once per week to twice per week. The developmental pediatrician gave us some advice, which boiled down to "You're doing all the right things, here's what else to look out for and other strategies you may need to consider down the road," and he also agreed with us that this seemed to be essentially a language delay, and not part of a more broad developmental impairment. He recommended continuing to remain vigilant with Sam's speech therapy, and noted that because Sam has some motor planning issues we should consider PT and possibly OT if his fine motor skills didn't improve with the work on motor planning.

And, so, we got him evaluated for PT services, all the while not sure if we really needed the PT, but the PT said that he absolutely could benefit from services because he was showing significant trouble in motor planning activities, which was (and is) inhibiting his ability to participate fully in activities with his siblings and friends. (Mind you, the PT is through our county's early intervention - we're not paying her, so she doesn't have to tell us he needs PT just to keep her paycheck - she gets paid the same whether Sam needs services or not). And so - we started PT for Sam.

And it is becoming more and more obvious that Sam's got something else going on - but we're not entirely sure what. He's always clutching things, won't ever put down the collection of things that he carries under his left arm at all times. He FLIPS out when we change his clothes - whether it's from PJs to daytime clothes, or vice versa (today I figured out that he was much more willing to be changed out of his PJs if he's on the floor, rather than the changing table - so maybe it's a balance issue? I don't know). We talked to Abby's OT (man, we have a lot of therapists in our lives!) and she said that the things going on with Sam probably warrant further investigation/evaluation beyond the PT that he's already getting. So that will probably happen soon.

But, meanwhile, the speech therapy and PT continue - and he's doing quite well. He still doesn't talk nearly as much nor nearly as clearly as the girls do (and even the girls are still behind age level - but growing exponentially), but he finally has words. At last, he has ways to communicate with us at least for some things. Certainly, we always know when he wants to eat. And when he needs/wants a new diaper. And when his sisters are stealing his toys (MINE! MINE!) He's really growing, and we're so proud of his progress - it's taken a lot of work to get here. No doubt , even without so much speech therapy, he would likely have caught up to his peers - but it really could have taken years (it still might - but at least we know he's consistently making positive progress.

But nothing could have made me happier than this evening, while in the midst of a tantrum, Sam cried out and formed his first sentence (okay, it wasn't a grammatically correct sentence, given that it was missing a subject - but he subject was implied, as you'll soon see. He had a plastic water bottle that had contained gummy candies, a bouncy ball, and stickers from a birthday party we went to last weekend. He desperately wanted to get inside the container, so I opened it, but took the gummy candies away (they weren't kosher, plus it was pretty close to their bed time). He was unbelievably distraught over the loss of his prized possession, and he started to throw a tantrum, while desperately reaching for the gummies. "Mine! Mine!" I tried to give him the stickers out of the bottle. "No!" I tried to give him the bottle. And then? He cried mournfully, he sobbed, and he pushed the cup away from him and cried: "Don't Want The Cuuuuuuuuuuuuuuup!!!!"

My baby strung four words together in order to communicate exactly what he wanted - or didn't want, in this case - and although it was in the midst of a tantrum (thankfully, unlike Abby and J, his tantrums never last long and are generally pretty tame), I was so proud of my little man. I still am.


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16 comments or Leave a comment
yeishlitikvah From: yeishlitikvah Date: November 20th, 2009 02:34 am (UTC) (Link)
I am so thrilled to hear Sam is making progress.

re: changing and what not, how does he do with baths, sensory and textures in general. what is the texture of your changing table??

sorry one handed typing in progress
ichur72 From: ichur72 Date: November 20th, 2009 04:09 am (UTC) (Link)
I was going to ask about sensory issues too. If he's got 'em, try to find an OT with experience in the area.

But more importantly, that is a terrific sentence. Go Sam!
estherchaya From: estherchaya Date: November 20th, 2009 11:34 am (UTC) (Link)
He's fine with baths, fine with textures, and it's not the tags in his clothes that bothers him. The changing table is exactly the texture of one of his favorite blankets. I think the clothes thing is either just a control issue, or has an issue with balance when he's up that high.

The OT that's working with Abby is working with her for sensory issues and has a lot of experience in that realm. Abby's sensory issues are odd. She HATES Sam and Ellie and will NOT play with them and spends her time yelling at them and pushing them around. I *think* it's because she can't stand when they brush up against her (light touch instead of deep pressure) and/or that she doesn't like falling over if they knock her over. She also cannot handle strong auditory input. Any loud noises and she covers her ears immediately - even if it's HER that's doing the screaming. Heh. She also never sleeps and the only thing that helps her get out of her frequent, raging temper tantrums (that she's been having since she was 3 months old, so this isn't a two-year-old thing) is either time (leave her alone screaming for a fair amount of time) or tight hugs (and even that takes a while).
ichur72 From: ichur72 Date: November 20th, 2009 03:20 pm (UTC) (Link)
Have you tried a pressure vest with Abby? They don't work for every kid who likes deep pressure, but for some kids they help with regulation.
estherchaya From: estherchaya Date: November 20th, 2009 03:30 pm (UTC) (Link)
I've tried it, yes - she hates it (Julian did, too). Julian didn't take to having lap weights either, but I haven't tried those with Abby - but she doesn't sit down for very long unless she's in one of our laps (and then she's totally fine and happy). She's a bit of a mystery, but she's doing very well with the OT that she's getting and IS starting to venture into playtime with Sam and Ellie occasionally.
ichur72 From: ichur72 Date: November 20th, 2009 03:34 pm (UTC) (Link)
My son hates the one we have too. The instant I put it on, he throws himself to the floor and wails piteously. I know people whose kids have done very well with them, but mine was not one of them.

I'm glad she's doing well with the OT and starting to play with her siblings.
estherchaya From: estherchaya Date: November 20th, 2009 08:32 pm (UTC) (Link)
sensory issues are such a moving target. Everyone has a sensory profile and sometimes I wonder if "sensory processing disorder" is just a lot of hooey. EVERYONE has sensory input limits - especially kids. But on the other hand, some kids seem so overloaded in today's world that it's only fair to help them find coping mechanisms early. It's just hard to keep my inner skeptic at bay all the time.
ichur72 From: ichur72 Date: November 20th, 2009 08:50 pm (UTC) (Link)
>> sensory issues are such a moving target.

Yep, we have certainly found that to be the case.

>> sometimes I wonder if "sensory processing disorder" is just a lot of hooey.

I hear you on that. IMHO, it *is* real (though very slippery and fuzzy to define) -- but I have my moments of doubt about the therapy and the "sensory diet" business. Above and beyond the issue of study results being ambiguous at best, I wonder sometimes whether the kids respond to sensory-oriented OT purely because they're getting extra attention that takes their sensitivities into account. And then sometimes I drink the kool-aid because of things like seeing my son's balance improve immediately after his first session with the OT.
lynsaurus From: lynsaurus Date: November 20th, 2009 02:34 am (UTC) (Link)

Sounds like the kids are all working hard in therapy, and you're doing everything you possible can for them. Hope things get easier for you.
estherchaya From: estherchaya Date: November 20th, 2009 11:41 am (UTC) (Link)
kmelion From: kmelion Date: November 20th, 2009 06:36 am (UTC) (Link)
How often is Sam's hearing checked?
estherchaya From: estherchaya Date: November 20th, 2009 11:41 am (UTC) (Link)
He's getting periodic tympanagrams (sp?) every few months (he just had one) and he's had his full-blown hearing test in May and is due for a second nowish. The most recent tympanagram showed that his left eardrum wasn't vibrating quite the way it should, but then the doctor pulled a pile of wax out of his ear.

Unfortunately, I wasn't the adult with Sam that day. If it had been me, and her theory was that the wax was the culprit (he's *always* got an astounding amount of wax in his ear), I would have made her redo the tympanagram in order to prove or disprove her theory. (Plus, even if that *was* the problem, since this is a perpetual issue with Sam, it MIGHT point to the possibility that he doesn't hear as well or quite the same way as the rest of us. We do also think that he's got intermittent fluid in his ears; he gets more ear infections than any of the others. But we'll see.
kalki From: kalki Date: November 20th, 2009 08:18 pm (UTC) (Link)
I'm glad to hear that they are all making progress! It's insane the amount of therapists in my life, I'm sure you have even more! :D
estherchaya From: estherchaya Date: November 20th, 2009 08:29 pm (UTC) (Link)
Julian's got a speech therapist and a developmental pediatrician (who may as well be a therapist in his own right).

Sam has a PT, a speech therapist, a special educator, and now probably an OT.

Ellie has the special educator and a speech therapist.

Abby has the special educator, speech therapist, and OT.

And I have a therapist I don't see often enough. :)
kalki From: kalki Date: November 20th, 2009 08:33 pm (UTC) (Link)
Sadie and Max have - Speech, OT, PT and a teacher who is working with them on all the items. Plus a private PT that they are still kind of seeing.

Oh, and I have my own PT now and I need to find a therapist, but don't have the time to look.

but you totally win :P
estherchaya From: estherchaya Date: November 20th, 2009 08:37 pm (UTC) (Link)
admittedly, I have twice as many kids as you. And Julian's worth 3 kids all on his own.
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