Long time readers at 11D know that my youngest son, Ian, lives in a world of silence. He’s two and half and can’t talk. No, he’s not just being stubborn or testing me or willful, as my mother long suspected. He simply can’t do it. Occasionally, a word will burst through “BALL” “CAR” “GOO” (that means juice), but it’s rare.
The therapist says he has a motor planning problem. Sounds like he should go to driving school for that, I know. Ian’s brain isn’t well connected to his mouth. When he’s not trying, sometimes a whole sentence will escape. But when he tries, there’s nothing. Now that he’s older and more aware, he actually talks less than he used to.
He accompanies me through the day’s chores with a smile and a skip. He loves going places and as do I, so we go for walks to the coffee shop together and to the supermarket. Never hollering. But also none of the toddler chatter that other parents experience.
After we moved out here and unpacked the basics, I started to research speech therapy options for him. It took many phone calls to locate the right office. After I reached the right person, there were three or four hour long meetings at the house. The first with the social worker, then with the evaluators, then with the social worker, evaluator and the service provider, and then again with the social worker.
The state set me up with a speech therapist who comes to the house twice a week to provide services. She gave me a list of supplies and videos to buy. And after she leaves, I have been instructed to follow through on certain exercises: chewing stale licorice on the side of his mouth, blowing bubbles, stroking the side of his face with sponge.
And the state picks up most of the tab. I only pay $21 a month.
Now that we’re finally getting the services, Ian is doing great. He has learned about twenty new signs and is less fearful about trying to talk.
But I fear that these services only benefit well educated, middle class parents like myself. How would a single working mother manage to attend those meetings? How would someone without connections or knowledge of the internet even locate that first phone number at the state agency? How would they be able to complete all the paperwork?
When Ian turns three in April, the state will no longer be responsible for his services. The town is expected to take over. Another mountain of paperwork and meetings. The first transition meeting is on Monday.
Because he’s super-smart, the therapist feels that Ian shouldn’t be lumped into the special education pre-school that the town provides. The state mandates that every child should be entitled to an education in “the least restrictive environment.” So, we’re going to try to have the town provide free speech therapy, while I send him to a regular pre-school. This is going to be a big battle, but I’m ready for it.
I wonder if other parents would be able to fight for their children in the same way.
Apt. 11d 
Get ready to fight. School systems everywhere are hard-pressed for money and the provision of special education, and its attendant therapies, are constantly compromised by financial limits. Yes, you are absolutely right: the system is basically unfair, rewarding those who have the time and wit and money to press for their kids’ needs. But you will first have to fight your own battles. Perhaps if you find yourself on a parent’s advisory committee (or whatever it is called in your school), you could raise issues of fairness and openness with the school administration. But that is a great deal of work and the underlying money problem cannot be resolved on the local level; so, there is always backsliding, even by the best intentioned schools.
Just this evening I noticed that a bipartisan special education bill is about to pop out of Congress. Even Kennedy is praising it (though Jeffords is not!). But the upshot will, I believe, make it harder for those kids with “marginal” special needs to get the services they need – that could be Ian. Also, the IDEA is basically a lie. Since it was first enacted in the 1970’s the Feds have never lived up to their promise to fund 40% of special education costs. They say they have “reconfirmed their commitment” to help take the financial burden off of local schools, but if you believe that, I have a bridge in Brooklyn I’d be willing to sell…
LikeLike
If you were a single mother, you’d find the time. When your son wasn’t speaking enough, you’d call the doctor. If the doctor didn’t tell you whom else to call, you’d stay on the phone until you found someone who did. And you’d tell them that the meeting was *after* work, not in the middle of the day. You wouldn’t need the internet or a particuarly flexible job, you’d just need a whole lot more determination. And when it came to your kids, you’d have it.
My mother raised me and my troubled brother on her own. She worked three jobs at one point, and later, when there was just one job and we were in junior high, she went to school 2 nights a week while my brother “watched” me, and took us to my brother’s cousellors on the other 3. I don’t know how she did it – I can barely remember to take the trash out if I’ve been working late. But I have a feeling that if you suddenly (God forbid) found yourself a single mother, your kids would still get the best care that’s out there.
LikeLike
anon – I didn’t intend to criticize single mothers in that post. I meant to criticize the state for making it more difficult for those without means or connections to find services. Access to equal education should be available to all. Access and quality of education should not depend on the resourcefulness of the parents/parent.
LikeLike
My almost 5 year old son Joseph was very similar, although his motor-planning issues are complicated by extremely low muscle tone. He’s quite smart, as measured by his teacher (not just his doting parents!). In California he got popped into early intervention soon after he hit 18 months, and was able to take advantage of a range of free services that made all the difference.
Have you looked at the book “The LCP Connection”? Well-researched info on work the British have been doing with kids with dyspraxia and apraxia of speech (inability to produce sounds consistently). The research shows that Omega-3 fatty acid supplements (in a particular ratio w/ Omega-6) can do wonders for these kids. My kid made immediate progress. It’s not a magic bullet that “fixes everything” but the supplements do make a difference. When we forget to give them, he can get gawky again, although his language is so good now that he doesn’t seem to lose ground there.
Re: special ed – we are in the Oakland CA school system, and I had a lot of dread about that before he started. Urban system, in bankruptcy no less, lots of problems. But getting a good teacher made all the difference. He is in a sheltered classroom with all special needs kids. We just had his final pre-k IEP (next one will be in kindergarten) – glowing reports. I did have to push to get him all the speech therapy I thought he needed. Individualized Education Plans are a contract, and you must act like a lawyer and negotiate.
Talk to people who can inform you of your child’s rights – the district will offer you X, but you can refuse to sign off on the IEP and negotiate for Y. Special needs activists guided me through this. I had to threaten some clueless administrators this summer to get him into a class to which he was entitled by law. Because of my brash pushiness, a whole classroom of kids who had been overlooked got services for the summer. (and I got his teacher a summer job, too – they weren’t going to hire her)
Joseph is by far the smartest kid in the class, and has mastered the entire academic side of the pre-k curriculum, with 7 months yet to go in the school year (plus a month of summer session). So what? He still needs help in other areas, like fine motor and large motor, and it’s a great enriched pre-k, with plenty of art, music, imaginative play, stories etc. By the way, while he probably could say and sign ten words at 2.5 years, he now speaks in “long, complicated sentences” with grammar and vocabulary at age level or higher (from his report). He initiates conversations and uses tone of voice beautifully, talks about his feelings, speculates on hypothetical situations without any visual cues, etc. I did not have hope for this much progress this soon, two years ago.
One more piece of the picture – Joseph has a diagnosis of sensory integration dysfunction, which I simply didn’t understand at first. However, once we started addressing it with a trained occupational therapist (around age 2), he began making huge progress in speaking and large motor skills. The motor planning issues seem to get better when we deal with the sensory integration stuff. This is something that doesn’t really go away – you just continue to address it. The book “The Out of Sync Child” explains it all in a popular format, backed up by plenty of research and clinical experience.
If you were my friend and neighbor, I’d advise you to advocate for an occupational therapy evaluation with somebody trained in sensory integration. This piece of the puzzle may help the language in ways you would never believe. It also helps behavior issues that can arise later on when the kid gets overwhelmed with the school environment.
Access and quality of education “should not depend on the resourcefulness of the parent” but they do. It’s too bad, and I’m sorry for the kids whose parents aren’t as capable as I am of advocating on their behalf. But this is true for typically developing kids as well as special needs. Your child is lucky to have you in his corner.
Good luck to you.
LikeLike
Our neice has something similar. She was unable to speak more than a couple of words (No and mommy) at 2. She had terrible tantrums, and seemed to understand people pretty well, but could not communicate verbally. Initially, she was tested for autism, but was then diagnosed with some kind of inability to process language. The local health authority (yes, she lives in England, where there’s just as much red tape, but also far more suport) helped to set her up with therapists and training for her parents and older brother. It took about 2 1/2 years, but she’s now HUGELY verbal and at the top end of her class.
My stepdaughter, on the other hand, was raised in Germany, where a fairly serious hearing problem was not diagnosed until she’d been in school for 3 years and they were planning on sending her to a Sonderschule — special ed for basic skills. Even with the diagnosis, the school system wanted to put her in with the severely developmentally and physically disabled. Because her parents were immigrants and not as familiar with their rights or with what facilities were available, she received no extra help — although it was my impression that the German school system really doesn’t provide for any mainstreaming. Students are tracked in ways that reinforce initial perceptions of the students’ abilities. There is little emphasis on getting each student to his or her best — it’s his or her best within the confines of “where he or she belongs” — by the age of ten, the student’s life path is pretty much set. When there are no services like the ones available to my neice and Ian and Joseph, the results can be heartbreaking — especially when bright kids are not diagnosed or misdiagnosed early on.
LikeLike
Your post really meant a lot to me. I have two highly verbal girls (3 and 5), and toward the end of some really loud days, I find myself starting to wish they didn’t talk much. And I always catch myself, and remind myself that there are issues on both sides, but I haven’t known anyone with this specific issue, and it was really enlightening to me to read about it. (I am not a longtime reader, so this is the first I’ve read about your son’s speech problems)
And there are problems on our side — not relating to speech, but related to special education in some ways, too.
If the special ed preschool near you is at all like the one near us when my older daughter was 3, it could end up being really good. By the time she was 3 we knew that she had some things that could be worked on, but nothing academic. We chose, however, to have her interview to be a peer model in the special ed program, and she was accepted. There were 4 ‘typical’ kids (the peer models) in the classroom, and 6 kids with special needs. They ranged from a boy in a wheelchair to kids with sensory issues, to autism. It was the best experience for her — and us.
There were 3 full time teachers, two of whom had Masters in special ed., and a student teacher some of the time. They learned so much. Oh — and all of the teachers used sign language with all of the kids (some by necessity, some just because they picked up on it), and two of the kids used communication boards instead of sign language for their expressive language.
Anyway, I hope that there’s something similar that becomes available, or appears for you.
We’re currently still dealing with the schools in our own way, and I agree, it’s difficult to think about how others without access to the same resources (internal or external) deal with this kind of thing. I spent many, many hours doing research before enrolling my daughter in her current school, and I had to use a lot of resources to even convince my husband that I knew what I was talking about. And while I feel wholeheartedly that we made the right choice, it’s hard to talk to people about it, because very few people have thought about — or *had* to think about whether the standard educational choices will even come close to working for their kids (I know a lot of people take these decisions seriously and makeall sorts of varied choices, but like you said, it’s those of us who know where to look and who to call, etc…)
LikeLike
Praents, especially single parents, find a way to help their children to the best of their ability. However, as you state Laura, it does become tiring and after struggling to keep the boat float alone, sacrifices are made. It is a constant battle with schools, especially in financially struggling states, to get the resources to help children. It is much simpler to lump all struggling children into one group classified as special ed. It is other through parent advocay that changes are made and I find it disappointing that those of us with grown children don’t seem to worry about the rpoblem as much as we should.
Thank you Laura for the wake up call. We all need to be more involved, not just for our children but for those parents whose lives are worse than ours for any reason.
Also, your son will do well. I personally know a well-known college quarterback who didn’t speak until he was 4, diagnosed at 5, and began kindergarten at 6. Most people would never know he started off as a “silent” child.
LikeLike
My son was also silent the first 5-6 years of his life but he outgrew his problems pretty much on his own. He took speech therapy through junior high but I think he would have progressed nicely without the therapy. The good news is that in high school he was voted Senior Class Favorite and is quite verbal now as a young adult.
Certainly parents should investigate their child’s problems but please know many problems work themselves out in time
LikeLike
I have a slightly odd story — a friend of mine, according to his parents, said barely a word till he was 5. And then, in a couple of days, started talking like a 5 year old. They were v. young parents and, knowing them when they were older, suspect that their son, who never became spectacularly locquatious, couldn’t get a word in. They never, they said, worried about it, which seems extraordinary in these anxiety-ridden days (he’s now 40, has a PhD in maths, and, I believe, an astronomical salary — i met him when he was 15).
LikeLike
Sorry to comment here so late Laura, but I just wanted to say that I really appreciated this post. One of the perils of being worldly and intellectual (as we all are, more or less) is that we sometimes allow our own political and social agendas–which we’ve worked so long to develop–to complicate our relationships with those closest to us. I know it’s a simple thing, but I was impressed by how you expressed your clear and fully aware determination to get your son the care he needs, and that the same time ask the hard questions about the disadvantages so many others might suffer in trying to do the same thing, given the social and economic divides which exist in our country. That’s a hard line to walk, and it’s always gratifying to see someone doing so.
Anyway, I haven’t any insight into this particular matter to share, except that it’s also been my experience (like Harry and Betsy) that many such developmental problems do disappear over time when the environment in which the child is raised is a secure and supportive one. Not that you shouldn’t do everything in your power to address Ian’s needs; just that, knowing you as I do through your example here on the blog, I’m sure he’s in good hands, and that’ll make all the difference.
LikeLike
While my own son’s experience does show that kids do “grow out of it”, we’ll never know how much all the intensive therapy helped him. Sometimes people tried to be reassuring and tell us “he’s fine, there’s nothing wrong with him” which is true, there is nothing “wrong” with him. He’s just right. But getting the intensive therapy and developmental pre-school have probably contributed a great deal to his early success.
AUtistic kids, in particular, can be helped a great deal if treated young. They look so beautiful, and their behavior can sometimes mirror parental “geeky” or “nerdy” personalities, that the parents don’t want to get help. They think it will all work out. Maybe it will, and maybe it won’t.
Don’t let success stories like that of my son keep you from asking for help. If you don’t like the treatment or don’t think it’s helping, you can always say no thanks. we have turned down many suggestions from MDs about what to test for and what to do. But don’t have your head in the sand – early intervention can make all the difference for many children. And intensive parenting alone may not be the only remedy – speech, occupational and physical therapists really do have tools that you don’t, and they can really help your child.
LikeLike
My son (now 3 3/4) has been receiving speech therapy through our local school system. In a year, he’s gone from having about 100 words, most of which were monosyllables, understandable only by us, to being ludicrously verbal, although still slightly hard for strangers to understand. I have no idea how much credit goes to the therapy, and how much was just his own developmental timetable, but I have no regrets about having jumped through the hoops to get him the services.
It’s almost certainly cheaper for them to provide an hour a week of speech therapy (which is what my son got) than it is for them to provide full-day preschool, so if they’re pushing for the preschool, you should ask if they think there are developmental delays other than the speech.
I had much the same thoughts about how hard this would be, not so much if I were a single parent, but if I had a non-flexible job where I lost pay if I had to take an hour for a meeting, and was at risk of losing the job entirely.
Feel free to email if you want to talk about our experience with the early intervention program.
LikeLike
thanks everyone for the kind words and helpful advice. It’s been much appeciated by myself and my family.
His unofficial diagnosis is apraxia. He has the words bottled up in his brain, which come out when he isn’t trying. One time he fell on the driveway and said, “Ow. I got hurt.” But he’s never been able to say that again. Kids with apraxia tend to do okay, especially those who learn to compensate early on by using hand signals. He has done that since he’s been one, so we’re not terribly worried. He also doesn’t have any of the other complications that kids with apraxia sometimes suffer from, like poor fine motor skills and eating disorders. All good signs.
But we are determined to keep up his speech therapy. It can’t hurt. Our town does not provide services to pre-K kids independently. It’s a small district, and the schools want to conserve costs by putting all special needs kids together in one classroom.
LikeLike
I was going to discuss sensory integration therapy, but leila did a great job with that info. It is invaluable for kids that have these kinds of issues. You describe my son, who is now 16, very able to talk, just not to mom :)Je still has motor planning issues, but it will ever be thus, and he and I are the only ones who notice. He is a fabulous athlete! We also had early intervention services, and he is luckily very bright,so people tended to notice his gifts more than his deficits. Be positive,listen to other’s experiences but you know your child best, and every kid is different. Cliche, I know, but as a mom I know how tempting it was to write “This sounds just like MY child” but there are differences, I’m sure.
You may not necessarily have to fight for early intervention services from your town. most know the earlier you spend the money, the less you spend in the long run.
Good Luck!
LikeLike
Hi there,
I apologize in advance if you know about this, but have you looked into PROMPT for apraxia?
Also, I don’t know what state you live in, but if it’s NY, they have SEITs (special education itinerant teachers) who sometimes go into general ed. preschools in this kind of situation–my daughter had one.
I’ll shut up now….
LikeLike
Thomas Sowell has a book about kids who for quite a long time just don’t talk, and then suddenly flick over to talking and often turn out to be quite intelligent and successful. He wrote it because his own son was like that, and then various people would start saying things like “oh yes, my son didn’t talk until he was five”.
Of course that doesn’t guarantee your son will suddenly start talking and everything will be fine. But it does sound like he can physically talk, by the way he does so when surprised. This is different from my speech problems, which get worse the more distracted I am. And as you say he doesn’t have associated other problems. It just may be that his brain is busy doing something else at the moment.
LikeLike