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Developmental Zig-Zags

Nov29

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Advice Smackdown ArchivesAmy,

I am sitting here crying because I don’t know what to do right now. I have a three year old son who was a late talker, and has also been aggressive/defiant. I figured a lot of his behaviors were tied into the fact that he couldn’t communicate properly. He started with early intervention when he was two and was diagnosed with a phonological speech disorder. It wasn’t helping at all, so we decided to go through a private pediatric speech therapist. We have been going for about a month and he hates it. Today after about 15 minutes he just lost it. He was kicking, hitting, throwing things, and nothing any of us did could make him calm down. He does this a lot at home as well, mostly when he doesn’t get what he wants. We have tried every form of discipline and nothing even makes a dent in his behavior. The woman who runs the speech clinic is an OT and she strongly recommended he start seeing a behavioral therapist. At this point his speech therapy is useless unless his behavior changes.

My little guy is already in preschool twice a week, speech twice a week, and they want this too. I have a 17 month and another baby due in four months. I feel like adding anything else is just cruel. My daughter already has to wait in the waiting room with me for so much of this and I don’t think my son can take any more. That gives us no room for the things he likes to do. I thought about replacing one speech session with a behavioral specialist, but they say he really needs to be in speech twice a week. I used to be a high school special education teacher and I know how important it is to work on these things while they are young, but I just don’t know if it will be too much.

Thanks,
Ally

Oh, I’m so sorry. Reading your email was like opening up a time capsule to the sort of desperate emails and blog entries I remember writing just a couple years ago. I have been exactly where you are now. The absolutely disastrous therapy sessions. The lack of definitive answers from the “experts.” The seemingly endless about-faces and course corrections that keep you from feeling like you’re making any progress at all. You just want somebody — anybody — to FIX IT, and with each new person who fails to FIX IT, you almost stop believing that the problems even CAN be fixed.

But despite having been where you are emotionally, all the crucial details about my child were different, so I unfortunately can’t say that “oh, your solution is to drop therapist W and see therapist X two times a week instead and buy book about Y and Google Z. Oh, and cut out Red 40 and Yellow 5 food dyes. Ta-da! Problem solved!”

I can say that this frustrating zig-zag path through developmental delays and behavioral problems is usually just that: a zig zag. Trial and error. The first diagnosis and therapist and treatment plan rarely seems to work out perfectly — stuff gets added and taken away, new options are proposed and personalities clash and some approaches work and others are useless and some seem to actively add on to the carnage and make things worse.

But I know this much is true: The path only dead-ends if you let it. If you give up or stop trying or stop fighting. That’s the only sure-fire way to ensure that you will never find the solution or see improvement. No matter how overwhelmed you feel right now, no matter how unqualified you may think you are to parent this question-mark of a child, no matter how tempting it might be to just throw up your hands and quit everything and keep your son at home all the time or let the damn wolves raise him already…you don’t. You have your cry and your anxiety attack and your third glass of wine and then you sack up and call that behavioral specialist tomorrow and you just. Keep. Going.

That doesn’t mean, of course, that you can’t hit the pause button every now and then and reassess everything. If the speech therapy is “useless” given his current behavioral problems, STOP IT. Or cut back! I’m a bit confused by that…his therapists seem to recognize that the behavior stuff needs to be addressed before speech therapy can really make an impact, but they’re still insisting he show up twice a week for what sounds like little more than expensive one-on-one meltdowns? It sounds like MAYBE it would be worth pausing or cutting back on the speech therapy for now and focusing on one thing at a time. If the aggression is inhibiting the success of therapy, then by all means focus on the aggression. Give him a break from the speech sessions that obviously have negative connotations for him right now and see if the behavioral specialist has any specific recommendations about which problem is your chicken and which one is the egg and which one should get the Big Guns right now.

We had the same thing happen — with a terribly misguided attempt at a Lunch Bunch feeding therapy-slash-social-skills group that seriously made me HATE LIFE FOR MONTHS. Even though his eating/texture issues persisted, we tabled the problem for awhile because Noah clearly wasn’t ready to work through those issues, at least in that environment that triggered so many other anxieties and sensory quirks at the same time. Your son might not be ready to work on his communication skills just yet, or at least not so intensively. Perhaps a specialized social skills group that has SOME speech activities involved but mostly focuses on behavior and interaction would better set the stage for him, so to speak.

And yet, I know. You just read that sentence and groaned, because did I not read the part about how much stuff you have to send the poor little guy to? And the siblings in the waiting rooms and how overloaded the schedule is? Yes. I totally did. And you are totally right. I think some therapists DO sometimes forget that not every kid is an only child with a full-time stay-at-home parent to shuttle them from therapeutic activity to activity. And that not all of us are down with the modern take on overscheduling our kids to death. Making sure your son has time to be a kid is important, and making sure that his siblings are not short-changed is equally important, and unfortunately YOU, the parent, will likely be the only one to advocate for that position. But that doesn’t mean you shouldn’t.

I’ve felt guilty too — Ezra has spent more of his life in his car seat than I would have liked as I chauffeured his older brother back and forth to camps and private preschools, and every Thursday he amuses himself in an OT waiting room, looking at every child who comes in hopes that maybe one of them will stay and play with him, instead of going down that mysterious hallway where he’s not allowed to go. Last September I had to make a call to send Noah to TWO preschools everyday, knowing that it meant eliminating his afternoon nap almost overnight, and saying goodbye to regular afternoon playdates with his typically-developing friends (and MY friends, the moms). For us, it ended up being more than worth it. But sometimes it’s not, and it sucks being the grown-up who has to make the decision in the first place. “Trusting your gut” becomes both a tired, frustrating cliche…and also the best and only advice I can possibly give you.

Personally, I’d give the behavioral specialist path a try. I’m sure it will lead to other diagnoses and recommendations instead of being an end point in and of itself, but it might be worth it. In the meantime, I’d say you are completely justified in your concerns over your son’s schedule, and cutting BACK on a therapy that is “useless” right now is NOT the same as giving up. Yes, these things do tend to be very interconnected and overlappy and his behavior problems may stem from his communication issues…but it’s possible you’ve been putting the cart ahead of the horse all this time and just didn’t know it, and a new, drastically different therapy path will be the right one.

And yes, now is the time to address his needs head-on and get to the bottom of things. You know this. But cutting out one speech therapy session a week — or even both, if you really feel he’s just not at a point for them to be effective yet — can still be doing just that. Addressing what he needs most right now, and figuring out how to get those needs met in the context of your WHOLE FAMILY, and what’s best for them — AND YOU — too.

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

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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7 Responses to “Developmental Zig-Zags”

  1. a Nov 29 at 7:12 pm Reply Reply

    Great answer; I heartily agree. Also, though, a few ideas to try to salvage the speech sessions:

    1. Ask if you can do a trial session with another therapist. His current therapist won’t be insulted; sometimes a kid will just respond better to a different person.

    2. If you don’t already, observe the sessions– see if there’s something that causes meltdowns that’s obvious to you, but maybe wasn’t to the therapist. For example, my kid’s SLP sometimes used to take his hand and “help” him do sign language. He hated it (quite reasonably, to my mind); it made him cranky and non-compliant; and I asked her to stop doing it.

    3. If you think the current therapist is great, ask if she has any creative ideas for working around the behavior. For example, is there a different room they can work in? Our speech therapy clinic has a “large motor” room– my son loves it, and he does much better there than in his SLP’s office.

    4. If the therapist doesn’t have any ideas for how to try things differently, see #1. It may be that another therapist will have more experience with kids with difficult behavior and a larger bag of tricks to draw on.

  2. Also speech delayed Nov 29 at 9:01 pm Reply Reply

    My son has a speech delay as well and has been receiving therapy for 6 months (he’s 26 months old now). Our therapist comes to our house. This is a godsend because I also have a 8 month old.

    We were able to receive in house therapy through local government (infant and toddler connection as well as the public school system) so that it’s affordable/free.

    Maybe you could get someone to do his therapy at your home?

  3. Brooke Nov 29 at 9:02 pm Reply Reply

    I will co-sign this column a hundred times over. You are your child’s biggest advocate – although you’re working with professionals, you still know him better than anyone else in the world. So if you have second thoughts about the speech therapy, ditch it for awhile, and do what you think is going to work.
    And I’m also in a very similar situation – although my son is not in the speech therapy world, he is on the ADHD/behavioral issues/aggression side of the world, and every time we talk to someone it seems we see something new (or they see something new). It’s frustrating, and full of tears and emotion and sometimes you really really want to give up and pretend like everyone else is nuts and the problems aren’t there. But, for me? It’s a whole lot easier to take time off of work, to shuttle him all over the city (or state, ugh), see the specialists, make the appointments, and mull over the results of 50 different assessments than it is to see his “issues” escalate.

  4. lindswing Nov 30 at 1:15 am Reply Reply

    Such a frustrating and difficult decision; I’m so sorry you have to make it!  

    I’m a school psych and I’ve been a behavioral therapist, and my experience is that when behavioral problems exist along with communication difficulty, they’re very often connected, like amalah mentioned.  Inability to tell you what he’s feeling and wanting might be the root cause of his meltdowns, and so I would second a’s recommendations to try to salvage speech before maybe taking a break.  Speech is just such a foundational skill to almost everything else.  But, there are great SLPs, and there are SLPs who are kind of terrible.  Same with behavior specialists, actually, so don’t feel committed to the first one you meet down that path.  

    And when I was a behavioral specialist, I went to the kiddos (home, school, other appointments), they didn’t come to me.  Maybe that will help?  

    Good luck!  

  5. Melissa Nov 30 at 1:17 pm Reply Reply

    I agree with Amalah and a. 

    My daughter is a little over 2.5 and has been getting pretty much a full range of services through Early Intervention since she was 18 months old. Both center based and at home. It was tough to say in the beginning where she was cognitively because both her receptive and expressive speech were so delayed. That caused tantrums, transitions caused tantrums, sensory issues caused tantrums…  But here’s the thing, her therapists were always flexible. Yes, there was an agenda… but always a variety of methods to accomplish the task. When PROMPt didn’t work because of sensory aversions, PECS was tried as well as simple Signing and a switch …. (and verbal language always)… as she got more into the routine of school, therapies, etc…. different things wax and wane.

    That’s why I agree that observing a speech session (or a few) is a great idea. Perhaps it’s something as simple as a certain technique that needs to be addressed. Or, something that you as a parent would notice that a therapist may not. Barring that, I also agree that asking for a switch may be a good idea. 

    Also, and I know this is hard, give him time. Time to get used to the routine, time to grow, Though we started Early Intervention with my daughter really early, everything was small steps until 3-6 months in and she got used to the routine (which in and of itself is a major accomplishment). 

  6. Karen Nov 30 at 5:04 pm Reply Reply

    We battled with aggression when ds was 2.5 and it did take some creative speech work to get it go away. Creative, as in the therapist took the time to make each lesson only what ds was interested in. This is much like the floortime model. If you have a background in special ed, you know that there are ways to appeal to a child and maybe some floor time with an older peer is enough speech therapy for him right now. Maybe someone playing with him while using words and direction would be more fun than a structured speech environment. As Amy says, you are the best person to know what to try and how to try it. Everyone else needs to listen and follow your and his cues. Good luck! It often seems like an endless road but I did it with only him and now am confident to add a sibling to the mix. You must feel so overwhelmed! hug hugs! Hang in there, you seem to be offering him a lot…maybe some of the timing is just off.

  7. TAIMA Dec 01 at 9:02 pm Reply Reply

    I’m not a parent, but I just wanted to say; when I was growing up, I spent a loooot of time in waiting rooms for my brother’s therapy sessions. (He has/had severe behavioral issues.)

    Did I hate it? Well, sometimes. Did it scar me for life? No, not really.

    Your kid(s) that this is applicable to is probably younger than I was, though. Anyway, it might be marginally helpful, so here goes.

    My mother made deals with me where she would take me to the used bookstore before the therapy sessions and buy a nice, lovely new book for me to devour while we were waiting. Or she would schedule me a surprise play date with my friends for that time. Or she’d buy me a new crochet hook and yarn for me to keep myself busy. Or we played mancala, or Go Fish or something.

    Just some things to think about. Sorry I can’t help more.

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