I feel your pain. My youngest is about 2 and a half. We took her for speech eval last month because we had some concerns about her vocabulary. The therapist wrote she “demonstrates a moderate-severe disorder of expressive and receptive language.” 
She starts her first speech therapy session tomorrow.
{Hugs}
It’ll all work out somehow, I promise.
I’m so sorry you’re going through this. Both my sons had/have speech delays. For a while, we thought the older one might have apraxia. He was diagnosed by his SLP, but a subsequent test ruled out that diagnosis.
The most frustrating thing to me, while we were trying to figure out next steps, was listening to other people’s “helpful” stories. “My grandson didn’t say a word until he was four, now he goes to Harvard!” and so forth. My least favorite was “Einstein didn’t talk until he was three!” Those people meant well, but I wanted to punch them all in the face.
I was a late talker but remember nothing about it. My brother told me I’d point at things and go “uh-uh-uh” and he’d translate for the adults. I remember pitching a major fit my 1st day of kindergarten when they tried to separate us, he never let me forget that. This was 1960, in Texas, nobody had therapists or counselors, it was all sink or swim. I started talking around 5 or 6 I guess, and got so smart I was tying my shoes by second grade. Love your kid and his silence and his ways, not what you want him to be.
What **drewtwo99 **said.
(Channeling my inner Ethnic Grandmother here.) So…maybe he won’t be a public speaker. He’s a good boy. He’ll find his way. Come give Gramma a hug. You want a sandwich? Of course you do. Everything will be all right in the end…if it’s not all right, it’s not the end. 
I totally get your anxiety. If it is any solace, it usually gets better (maybe not good but gets better).
My daughter is autism spectrum and has a severe speech delay. She’s made a lot of progress in the last three years and is almost 9. Up until 5, she had a command of about 20 words. Now She can communicate basic needs and wants. We’re occaisionally getting up to about 4 or 5 sentence conversations.
I assume you’ve had a plethora of tests and haven’t found a diagnosis, correct?
How many words does he know? Is he communicating via gestures, sounds, other non verbal means? Seems like the effort to communicate even if non verbal is a pretty important indicator
Have you tried PEX (didn’t work for us) or use an iPad and programs? There’s a lot out there now that can help.
CAn he start to spell and type? He’s very young for that but what do I know. Typing might be something to start.
I know I’m rambling, am not a doctor, but
- progress is good
- Trying to communicate is good
- Caregiver understanding of just how frustrating this is for your son is good. He can’t make his needs and wants known easily, and that is tough.
Just wanted to offer my hugs. My eight year old tested at 18-24 months verbally until she was around five. At eight she’s practically where she needs to be. She has autism and receptive processing issues. She does better with talking now than understanding what she hears. I have a feeling she will always be around the level she is at now but she’s learning to adapt and so have her teachers and friends. It just took lots of therapy and special help, so keep thinking positive. No quick fixes.
Does your son also see a speech therapist outside of the pre-school? We had one that was simply wonderful. She knew how to reach my daughter and I credit that 45 minute weekly session for 2 years as one of the biggest cntributors of getting China bambina up to at least a functional level.
We had plenty of ineffectual therapists as well.
One important thing I had from all the therapists was the need to drive communication. Verbal is best but non-verbal is also valid.
For my daughter during those years of maybe a 20 word vocabulary and echolalia, the few things that seemed to work for me were:
- Always make the child choose. The blue shirt or the red shirt, warm milk or cold milk, this way or that way. It is a way to force communication. One word answers are acceptable, grunts are acceptable, pointing is acceptable, grabbing the preferred object is acceptable, stomping on the non preferred object is acceptable – anything that is interactive communication is acceptable.
- She likes to sing. It would mainly be more like humming or sing the tune. She would sing with people. So, what I did would be to sing “hickory dickory dock, the mouse ran up the ______” I would pause, wait for her to say “clock” and then continue singing “the clock struck one, the mouse ran down, hickory dickory _________”. Literally, it was one or two words per song. We did this thousands of times with a couple of songs. Twinkle twinkle, the ABC song (she taught me the tune for twinkle and abc is the exact same). (China bambina also had horrible sleep issues, so there were many many nights when we’d be up for hours in her bed singing these songs over and over and over).
- Leap Frog phonics video. We sang that last night "The A says ah, the A says ah, every letter makes a sound the A says ah. The B says… I’m sure she watched this over a thousand times and she learned her phonics “L” and “N” are a little dodgy but she knows them.
For what it’s worth, the above seemed to help. If nothing else it made me feel like I was contributing.
She knows all of these songs and picks up many more these days at school. The day she came home and sang about half of the entire “take me out to the ballgame” I almost fell out of my chair.
Like Rushgeek girl’s child, China Bambina made huge strides from age 5 1/2. This also coincided with when we moved to the US from China and suddenly had the great sights and sounds of suburbia to explore versus a city of nearly 20M (Shanghai).
Have you tried an augmented communication device? The are really expensive but don’t break. Tablet’s like an iPad work as well (and I would add a case to make it more durable. There are lots of apps. In the autism world, there are forums where these are discussed.
How about a guy who had a speech problem as a kid? Apparently (its not something I could remember) I reached all the other developmental milestones but starting speaking later and when I did start it was incoherent to all but Mother. Speech therapy apparently helped.
I ended up OK. I have a mild underlying stutter that remains to this day, but like I said, its mild and does not interfere with my (heavily verbal) job.
What to watch out for: being unable to communicate with his peer group may cause problems. I was apparently desperately unhappy at pre-primary (5/6 years of age) due to my problem. I never made friends easily - keeping in mind that its impossible to know to what extent that was shaped by those early experiences. I’d suggest that you pay strong attention on his social interactions, until you’re satisfied that he is developing normal social interactions.
The focus on home language in the early years meant that the study of then compulsory second language - Afrikaans - was pushed to the sidelines. I never recovered from that and struggled with Afrikaans for the next 12 years, and barely passed it in my final year. (to put that in perspective, my next lowest mark was about 25% higher) I don’t think second language is an issue you would have to deal with.
A more positive income was that in an attempt to encourage language use, there was a lot of reading in my home language (English). (also delayed, and apparently picked it up thanks to a dedicated teacher ) Excluding the oral component, my English was excellent throughout my school year and I read several years above my grade.
So… based on my own reconstructed experience - could have been better but a good turnout overall. Just be involved and don’t be afraid to ask questions of the speech therapist. Follow up with any specialist recommended by speech therapist.
My son goes to a special school for kids with speech problems. It’s actually a class made up of half “regular” kids and half “speech” kids. So the “speech” kids can have some normal kids to “model” on. The Pre-K teacher is herself an SLP, and he goes every day M-F. He went there last year as well. Before that he got speech therapy at home for a year.
He also gets pulled out of class for 1-on-1 speech therapy with their head-of-department SLP for an hour, twice a week. He gets 1-on-1 occupational therapy and physical therapy sessions once a week.
He goes to Hebrew school on the weekends, in a small classroom (5 kids) with a teacher who is ALSO an SLP for some added opportunity to play and learn and interact with other kids his age. He’s in his second year of Hebrew school as well.
He knows some sign language. I’ve taught him about 40 signs plus the alphabet, and he’ll use about 10 of them in everyday situations, mostly when prompted. They teach and use sign language at his school, as well.
I only list off all of these “services” he receives, because it’s almost become second nature for me to do so. Meeting new people, trying to make new friends, and especially, family members… as soon as they grasp the true level of my son’s lack of language, they immediately start grilling me about what I am DOING to fix the problem. Like I’m going to ignore it and lock him in a closet or something.
Yes, I’m doing EVERYTHING that I know to do. I have badgered and begged, and made such a pest of myself at the local school district that they pretty much consider my son their #1 priority or at least they act like it, which is close enough for me.
And I still get the impression that people think I’m falling down on the job somehow. Because the kid’s not talking, I must not be doing the right things. I must have missed some memo on that perfect technique to try that would probably fix the problem in one week if only my poor son had someone willing to really take an interest in him and DO SOMETHING. And everyone and their mother-in-law got the memo but me.
It just makes me angry. When it’s not making me feel like shit.
Some days I’m okay, and other days I just want to stay in bed.
I feel your pain. I feel like such a bad parent sometimes. Especially when someone points out a straightforward fix to a long running virtually insolvable issue. You’re doing great and Sarabellum2004 has what an impressive amount of help (that you drove). People without special needs kids rarely “get” just what is involved. Try to ignore it as best you can.
The trouble is no one can tell you what works and what won’t work. There are tons of people out there trying to give “helpful advice” based on ancedotes. I mean if someone could promise if you do xxxxx 1,000 times, then the result would be yyyy. But no one can promise that, and you try all sorts of stuff that doesn’t pan out, and there are charlatans, and fuck it. You know your son the best of anyone, and you are his greatest advocate and champion. Be proud of that.
IANADoctor nor do I play one on TV. Some things seem to get better with age. I know we tried signs, PEXs, augmented communication device, etc. It seemed in our case that China Bambina learned to say the words at about the same pace as say PEX or sign, so I was kinda like what’s the point and gave up on trying these? Then literally within about a week of moving to the US and being 5 1/2 she made exponential improvements. Working on typing but China bambina has an action tremor that poses an additional challenge on this.
Have you tried to learn typing? Tablets with apps to help with communication?
Sorry I don’t have anything better to write except for hang in there.
I have not tried teaching him to type yet. I had recently given him a handheld gaming console for his very own, with some educational games on it. He was really enjoying “Lola’s Alphabet Train” and “ABC Mouse” and watching shows on Netflix, especially PBS shows like Curious George and Super Why. He was very proud of it, and carried it everywhere. He could navigate the menus and draw pictures with the stylus, and take photos with the built-in camera. It was his prized possession.
And then, he promptly broke the console a few days ago. Snapped the hinge on it.
Sooo… anyway, he does know his alphabet, but as far as being able to spell out any words or even figure out what letter a word starts with, or which words rhyme; he hasn’t gotten that far yet. He loves to be read to, and loves to have songs sung to him. He’s probably more clingy and cuddly than the average 4 year old boy, but then he does spend an awful lot of time (for his age) in classrooms and therapy sessions.
I guess it must be harder to figure out reading and spelling when you are non-verbal. If you never say it out loud (“B says ‘buh’”) maybe it’s harder to make those connections. Though I don’t doubt he’ll be able to learn how to read; it just hasn’t clicked for him yet. And really, even normal 4 year olds aren’t generally reading anyway.
I don’t know if this helps at all, but people don’t offer suggestions because they think you are lacking, but because seeing your pain causes a terrible sympathetic pain in them, and the only way to ease it at all is to try to help. It’s as instinctive a reaction as pulling your hand from a hot stove. It really, really, really has nothing to do with you, and learning how (and when) NOT to offer advice to people in terrible pain is a pretty difficult thing, one that takes honest-to-god work.
For those wondering, SLP appears to be the initials of “speech language pathologist”.
Manda JO is right, because my first thought was, “I can’t post in this thread because I have no useful advice!” But ugh, all the sympathy, I’m so sorry you have to go through this.
Agreed with fixing the problem… it can get so frustrating. When someone says, “Well, what about X?” and you’re like, “…yes, X was one of the first things that I tried,” for the twentieth time, it can get reeeeeally irritating. My almost-four-year-old daughter has social/communication delays, and although mostly I love her teacher, it irked the heck out of me last week when her teacher said to me, “She needs to learn that she has to communicate when something’s wrong.” Do you think I don’t know that? Do you think SHE doesn’t know that? Do you think we don’t work on this every day? Ahem. Anyway.
It sounds like besides the speech your son is doing pretty darn well and is intellectually on a level with his peers, which hopefully is a bit reassuring? The vast majority of the four-year-olds I know can’t read, and the ones that can read can’t really spell (they’re just starting to do “initial-letter” types of things). I suspect spelling takes a different part of the brain than reading does and which develops later (since it’s constructive rather than interpretative, if that makes any sense). So I wouldn’t worry at all about that.
(Something else you probably already do … sorry)
One thing that we emphasized a lot at that age was, “I don’t understand. Can you tell me another way?” This has really paid off. She uses gestures, she tells us context, she puts the word in a sentence.
What I noticed over time was that she wouldn’t get easier to understand even as her speech improved. Because she was using more complex ideas, abstract concepts, etc. So it was good that she was used to explaining herself in different ways.
That’s maybe the hardest thing about having a kid with a huge speech problem. You don’t have any view into their inner thoughts. You only get small clues into what’s bothering them. And it sucks that everything is such a struggle. Even now, at age 9, she still has to repeat herself a few times every day to us, and we understand her better than anyone else.
My son has a speech problem and we do this a lot. Even when we do understand him but it was garbled, we make him repeat by pretending we didn’t. The reality is that no matter how many services he is getting, the bulk of the actual work is done at home and it’s a royal PITA.
But there will be successes, too. He couldn’t say any r sounds for the longest time and then one day at supper he asked what a shrimp was r and all. Proud moment.
Just saw this thread-- Here are a couple more personal anecdotes if you’re still interested–
I have a son who took a long time to start speaking. At 3 or 4 years old he was diagnosed with severe apraxia of speech. When he did finally start speaking, he was very difficult to understand. He went through a lot of speech therapy. Now he just turned eight, and he not only speaks with almost perfect pronounciation, he’s a little chatterbox who will explain at length to anyone who will listen all about whatever subject he happens to be interested in. 
I also have a niece who took a long time to speak and was very difficult to understand when she did start speaking- her older sister would often act as her interpreter when they were say, 6 and 8. Now she’s a very smart young woman in college, with no trace of any past speech disorder.
Update:
At this point, I’m being pressured to apply for disability on my son’s behalf. A couple of family members are behind this push.
My first instinct is to scream NO WAY IN HELL at the top of my lungs. So far, the people in question have received a polite “butt out” but they’re persistent.
Am I wrong?
I’m feeling really angry that people are presumptuous enough to get in my face and suggest this, but maybe I’m not being reasonable here. Is there a bigger picture that I’m not seeing?
What does the SDMB think?
I think you should. If he is indeed qualified and gets that money, it will make life easier for all of you on that level.
Not to scare you, but I have a relative whose disability turned out to be more severe than anyone originally thought, and because she gets disability benefits, she’s also qualified for some other services and programs that she either wouldn’t be otherwise, or her family could not afford them.