Moe has had speech therapy since he was two years old. That's just over four years of speech therapy. Moe has gotten speech from early intervention, from the school district, and from a private highly recommended speech therapy practice.
We've used various methodologies from fill-ins, to singing, to PROMPT, a method designed to help people like Moe with apraxia.
Moe still doesn't talk. Not even a little bit.
I mean, he makes a lot of sounds, but very rarely are they even context-appropriate approximations. And of course, speech therapy isn't just about talking. His receptive language and communication skills (like pointing and gesturing and nodding yes and no) have greatly improved, especially in the last year.
Moe is a bright kid. He's engaged with people and his surroundings. He tries hard. But the language part of his brain is severely delayed. We know the motor planning piece is a big challenge. He will often shape his mouth correctly, but can't get the breath and sound. Or he makes the sound but can't shape his mouth. Beyond that, it is hard to say why language is so hard for him.
Moe's frustration level and associated behaviors have been increasing in speech therapy. On Monday, he tried to bite the SLP, grabbing and tearing her shirt. I felt terrible. Truthfully, I've been dreading taking Moe for a while. We spend a lot of time managing behaviors, working on the same sounds, working on a wide variety of activities but in the same office environment.
Yesterday, I received a call from the director of the clinic. She is a very intelligent, kind woman. Unlike other people we've worked with, she never implied Moe was a problem. She emphasized how much our SLP adores our family. But she made the point that after the length of time we've been working together, if the therapy is appropriate, we should see more progress. She made the point that we have to listen to what Moe is telling us. Speech therapy, at least the kind they do in this practice, isn't working for him right now.
But how do you give up speech therapy when your kid isn't talking?
She suggested another practice that is set up to incorporate OT and speech together. She suggested that maybe we also take a break for a bit. Sometimes the greatest progress happens during the down times. And if there's anything I've learned about Moe, it's that he needs to get there on his own. We can show and teach, but if his brain isn't ready for speech, there isn't much we can do.
On the one hand, it is devastating. It is hard not to feel like they are giving up on him. But I know in my heart, she's right. It isn't working for him.
But speech wasn't working. OT wasn't working. School wasn't working. Some days, it seems nobody knows how to help him.
We are still meeting weekly with an AAC specialist, who is also an SLP. But the truth is, he's struggling there as well. I'll write more about that another day.
The AAC specialist talks a lot about "total communication," or teaching Moe to communicate in any (appropriate, non-aggressive) way he can: gestures, sounds, signs, and the speech device. Of course, we respect all forms of communication throughout the day, but I'd like to speak with her more about incorporating that into our sessions (rather than just focusing on AAC).
But for now, we're taking a break from speech therapy.
"For now" it may not be working for Moe but who knows down the road?!? Sometimes a break can work wonders. You are definitely NOT giving up! I think of it as following Moe's lead. A difficult thing for us parents to do. I'm still learning. :)ReplyDelete
I know how hard it is to not feel guilty. Heck I still feel guilty after 14+ years. I don't think that will ever change. Part of being a parent...or at least that's what I try and tell myself.
Hang in there. You ROCK!!!
^^ What she said! Love this comment.Delete
For my severely speech delayed son, we gave up speech therapy about over a year ago. We chose to give it up in favor of verbal behavior therapy. I heard many many parents talk about the wonderful progress their kids made with the 'right' speech therapist. And what was I really getting for $150-175 dollars an hour? Someone telling me that it would take time, many sessions to do what seemed to me could be done at home by me, but even better. They could play with him, prompt him and have him repeat. Get him to make requests. Get him to label. Big deal. He has not made any progress in the last three years in his language. Save your money.ReplyDelete
I'm not sure what to say. I know it hurts to stop. I really and truly get that. But as you said, if it's not working then you're not doing him any favours by bringing him there. Just last month we gave up on a social skills group that has been a struggle for my son and a huge expense that we couldn't afford since last year this time. We just didn't see any results and my son was not happy going there. But I felt like I was giving up and I felt awful.ReplyDelete
It is very hard to admit things aren't working. OT, speech therapy are all traditional routes we take. I hope the break from speech does Moe some good and you find the right method for language development.ReplyDelete
We also "gave up" on structured speech therapy...and I am an audiologist and work with SLPs everyday! I fully believe in the power of speech therapy, but I believe some children with autism have a capacity for spoken language and some of their brains are just not set up for speech. Functional MRIs have shown that many autistic children have widespread neural bursts, instead of the tight connections/pathways that typical persons have when language is presented. However, just because you have stopped structured therapy, you haven't given up any more than I have. You wil continue to talk, read, and sing to him. If he gets something from it...great! Otherwise, you and he will learn to communicate in your own way (even if it is a long and frustrating way to go). I so empathize with you, because my 5 1/2 year old is also not speaking and he has been in speech therapy since 20 months of age. He has been in ABA therapy for over 2 years. He has received OT services...however, he cannot speak and is not potty-trained. Like you probably do, I hang on to every meaningful smile, the times he hands me the Cheez-its box, or reaches his arms up for me to pick him up (which is getting tougher:) Don't feel guilty....you have given speech therapy a good, long try. And you are continuing to work on communication everyday with him, it is just a different way.ReplyDelete
I don't know if Moe is doing better with speech. My daughter had trouble speaking and we later found out that it was her body's inability to fight strep throat. She ended up with Sydenham's Chorea at age 6. It was about a two year recovery. She is almost ten and doing great. Antibiotics keep her safe and she is finished with speech therapy and can speak well. One sign she had was that her tongue was slanted to one side when she was most ill. Strep Test or a blood test of ASO Titers could see if your child's speaking challenges may be attributed to strep throat. My child never had a sore throat with her illness. She also had ADHD symptoms.ReplyDelete