Early Intervention

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My son started his Early Intervention therapy today. They're wonderful there! My only concern is that his psychologist felt he needed 4-5 hours per week (he is quite delayed in communication) and he's only getting 1 hour per week and there is no speech therapist as of yet (and hasn't been for months). I'd like a happy medium, maybe an hour twice per week. They did determine that he also needs OT, so they're dedicating 15 minutes of his 1 hour to OT. I really think it's very bare minimum in terms of time though

How much and what kind of therapies are your children UNDER THREE receiving?

my son was in a half day thing once a week when he was 2.5-3

kind of a pretend nursery school where the activities focused around social skills and things like sitting still, hanging up clothes, etc. for special needs kids.

It was at the public elementary school and was a free gov't school system service.

See if there is one at your local school or maybe a neighboring town.

He was pre-diagnosed AS at the time but went because of speech issues - they had him pegged in a 'selective mutism' category. It's a laughable diagnosis now.

If you feel it isn't enough (and keep in mind that I think you may also qualify for a summer program if there is reasonable basis to expect a loss of progress over the summer without it), you need to advocate for what you believe. Early Intervention is a funded mandate by PL 99-457 (I don't know what USC number it has since become."

Anyway, you are supposedly an "equal partner" in the process, I think. That doesn't mean anyone else wants it to work out that way and they are usually teamed up in a way that is fairly intimidating -- or, at least, it can be even if they really try and help include you in all the decisions fairly. Each district is different about their approach, so I can't make sweeping statements that are also accurate, though. But if you honestly and sincerely feel that the weight of evidence available to you argues that more time should be spent then you really should press hard for that.

Since you are new into all this, I'd guess, there is so much to learn about. And it will be daunting at times. And there are many things that you will imagine is "their legal right" when it really isn't and it is your right, instead. Often, other needs will depend on your ignorance about the law, in fact. And you won't know any different. Let me tell you my story when Athena was 4.

Athena is profoundly autistic and was formally diagnosed by a psychiatrist when she was 2 and a half. Parents were telling us, eventually, that we had a right to ask the local schools to be involved. That surprised us because frankly we had no idea. So we called and asked and they said "yes," and then told us a bunch of "hoops" we had to go through to qualify from their point of view. That included a 5 hour team evaluation of Athena, which we had to schedule. We got that done by November that year, less than a month after her 4th birthday. We were told by the school that they would contact us if there was anything more they needed from us but that the process was "in place and moving along."

Sometime in January, I think it was the 22nd or 23rd of the month, Oregon Becky asked me about "What's going on, Jon?" I didn't know and told her I hadn't heard a thing from anyone, yet. So the next day I called the school and was told, "Uh, haven't you heard? Her school bus is supposed to start picking her up on the 26th!" Of course, I told them I knew nothing of the fact but we hurried to get her some new clothes and so on and got ready. The school bus came and she went off to school without us and that is how things started for us. No meeting. No plan. Just sending her off to school. We had no idea what to expect, but of course expected something better than her just sitting at home with us. Like Pollyanna, I suppose, never looking at the negative possibilities.

Athena, before school had started, had a kind of frightening behavior for perhaps the year prior. In the middle of the night, she would suddenly shriek out horribly and cling to us and then go back to sleep. Grabbing one of us always seemed to immediately calm her down. However, after about two months of school (maybe a little before, maybe a little after) sometime late in March or so, she exhibited an entirely different behavior. She would shriek out in the middle of the night just like always
but now would pound us with her fists literally for hours. I'm not kidding you. Literally, for hours. We were getting less than 3 hours sleep at night, most of the time. And it was horrible. She beat us and just couldn't seem to calm down no matter what we did. We'd start trading off for who got to take care of her in the night so that at least one of us could sleep. Since I was the work-earner, usually I got to sleep. But on weekends I would try and take my turns at it or when Becky simply had to have a reprieve.

Becky would just talk with the bus driver and she brought up some of these problems, just for talk's sake. We didn't have any clue at all that anything at school might be related to what we were experiencing. It NEVER crossed our mind. Not once. Yet, after a few weeks, the bus driver started suggesting to Becky that she go into the school unannounced and just go take a look at the class. After a few more weeks of Becky's listening and nodding about it but never really acting on the suggestion, the bus driver in frustration finally just said, "Becky. You are a BAD MOTHER if you don't go in there, now! I mean it. A BAD MOTHER. Get in there."

Well, with that kind of prodding she and I finally got a clue. Not that we had any expectations at all. We just figured we'd go in and see if there were any behaviors we might be able to lend some additional ideas towards, if we saw anything we could help with. But that's all. I mean, honestly, we didn't expect to see what we saw when we went in.

When we got to the school, we asked where the class was at and were told the directions. We went over and just stood outside the door for a bit before walking in. Mostly, because we didn't want to disturb anything and just wanted to see what she was doing in class (if we'd walked in, we figured everyone would suddenly say Hi and Athena would see us and maybe head over to us and we wouldn't get to see the real situation and couldn't give suggestions. I want to point out, at no time at all, was anything even slightly negative going on in our minds. We were expecting good folks doing good work, but perhaps not understanding Athena quite as well as we do and that maybe we might offer some suggestions after we took a peek.

What we did see was Athena tied, hands and feet, to a chair. Screaming and screaming and jumping the chair up and down and up and down. It was "circle time" we later found out. But both Becky and I suddenly knew why we were being pounded at night and why Athena was unable to be comforted by us, anymore. We sat there for 20 minutes, in some shock really, but wondering just how long they'd keep doing that, too. Eventually, we just walked in having made our decision to pull her out of school.

We still didn't know that this was improper, by the way. I mean, we knew that it was making our life a living hell. And we knew that if this were the cost of going to school that then we just couldn't accept the offer. But we didn't know at the time that it was improper. It was, but we just didn't know that much. Not even seeing it happen in front of us. We just knew that we had to stop what was going on so that we could finally get some sleep.

In talking with the teacher, and this was her first full time year at the school, she said that Athena would walk around the class on her own and that during circle time they didn't have the staff to follow her around. So she had asked administration about what to do and they had told her to do this.

So I went to talk with "administration." In this case, the head of "moderately and severly handicapped" who reported directly to the superintendent. It was in his office that I became aware of the fact that this was improper of the school. He flatly denied that they had told the teacher any such thing. And I believed the teacher, quite frankly. The discussion I'd had with her was so open and frank as we talked about what we were going through and she explained what she was struggling with that I completely believe her and didn't believe the administrator. But now, because of his stark denial, I was sure this was improper and perhaps flatly illegal. That was after we had already pulled Athena out of school and close to the end of the school year. But that was my first indication this was wrong on their part and that I had a _right_ to expect different things from the school.

Since I was self-employed, I would drop by his office for an hour or so several times a week. Partly, just to bug him. Partly, because I felt I needed to learn. Partly, simply because I could.

A few weeks later he told me a story. A parent had wanted the school to pay for piano lessons for their child. (Also, a moderately to severely handicapped child.) He said that the parents had been paying for piano lessons for a few years and suddenly decided to ask the school to pay for them. The parents believed that the lessons were important in helping make progress. I suppose (he didn't say) that the parents probably had been talking with other parents and at some point someone said, "Well, honey. The school should be paying for these if you are seeing good progress from them." And I suppose they thought to themselves, "Hmm. That would be nice." So they asked, I suppose. But regardless of why, they did ask and the school district said, "NO!"

Now, Dick (that's his first name) went on with the story. He said that the parents went to "due process" with the school and that the school spend $87,000 fighting the case. I said, "Wow! Why so much?" He said, "Well, they had to fly me around a bit and there is the lawyer time, etc. It adds up." I then said, "So what happened?" He said, "We lost." I said, "Cripes! You could have paid for all kinds of piano lessons for a lot less than that! Too bad you didn't know ahead of time. You could have saved a bunch of money." He said, "What makes you think we didn't know we'd lose? We knew in advance that we'd lose this case."

I sat there dumbfounded for a moment. I asked, "Dick... Why would you spend that kind of money when you knew you'd lose the case, anyway? That makes no sense." He said, "We spent it not because of this case. But because we want other parents to know the limits we will go to when we say No to them. It's a point we need to make and we were willing to shell out this money to make that point clear."

Sadly, it's been my own experience that all this can become rather adversarial even when you don't want that and the teachers don't want that.

None of this answers your main question. I wrote this just so that you would not be entirely a pollyanna and would carry your share of staying vigilant and yet at the same time embracing good relationships you develop, too. Your question seems to me more about what to do if you think that perhaps a little more could be done to help. My answer there is to work with the team and help convince them. If you feel strongly about this, make a good case and see how it goes. A lot of schools' staff are really, really good folks and they will listen very well and may help you make a case to others on the team, as well. In the end, though, just take some baby steps into this. It's all new, don't expect too much right away, and see what kind of progress you get over the short haul. Don't be a pain in the neck, but at the same time be assertive when you feel the time is right. The fact that the staff psychologist felt the way they did is a fact in your favor. Ask the others what they feel about that recommendation and listen to their answers and see if they are making sense. Sometimes, too much too quickly isn't a good idea. Perhaps they are thinking of gradually moving in that direction, but feel that they need to start slower and see what they learn, first.

Jon

If you're having a hard time finding a speech therapist you can look into getting a book called 'More than Words' from the Hanen Centre. It's a workbook which helps parents to improve communication and social skills.

After my son started speech therapy his SLP strongly recommended that we attend a More than Words workshop but we weren't able to go. I got the book and we used it on our own. It takes a lot of time and hard work, but anything that we do with our kids will require that focus.

The website is http://www.hanen.org
(I don't think they have a secure ordering form online though, so if you decide to buy the book, it's probably better to place the order over the phone.)

I forgot to add... when baby J was diagnosed he didn't qualify for funding for OT but he did qualify for 1 hour a week of speech therapy.

Essentially I work with him each day on my own dealing with sensory issues and teaching him how to play and socialize.... Anytime I hit a stumbling block I call an OT and have them come in to help me out. So far we're doing pretty good. I'm still worried about potty training but he's showing some interest in it now.

Thank you to each of you who responded. Jonk, reading about how your daughter was treated reduced me to tears. I know my children can be trying on the nerves, and I dread the thought of anyone treating them in such a manner. I am very new to this, though fortunately I've been lurking and reading a lot here over the past few months, which has helped afford me some insight I may not have otherwise had. Thus far, everything my children are involved in also includes me. The exception is my daughter's preschool, which is mainstream but small and focused enough that it works perfectly for her. Locally, it's less a lack of willingness and more a lack of service providers. Our county has not had a speech therapist for nearly a year, by my understanding.

(Our first year with having our child tied down wasn't the last time for our school district, by the way. We actually testified about our own experiences in helping some ot her parents who also experienced the same thing, years later, in the same district. So it didn't end with us and we weren't just an anomaly.)

I'm sorry, in some ways, that I even wrote it. At first, I started to write more here and was literally in tears, myself, trying. I had wanted to get a detail from Becky and I couldn't even get control long enough to ask her so she could understand me enough to answer. It took getting to that point to make me realize how selfish I am writing like that. So I deleted all it. It really doesn't apply to you.

Take your situation on its own terms and let things flow out of the relationships you build, now. You were asking about the hours, more or less. On that score, I'd just say that you should bring your thoughts and questions up with the team and see what they say. It probably doesn't directly matter what any of us may have experienced and your team at school may have some easily understood strategy you agree with. So just ask and see what they say. There is so much more to our story, but to be honest it was wrong of me to write about it now and here. Please, I apologize for that.

Take the world as YOU find it. If I had to say anything about what you originally wrote, I'd say it sounds a little 'thin' to me. But I don't know the circumstances well and these are your relationships, not mine. My instincts might suggest that you press for that "happy medium" you mentioned with the expectation that they will embrace your suggestion. Ask, listen, see where that takes you. Let us more experienced parents know as you find out more and maybe we can comment more about it, then.

Jon

P.S. Let me tell you some nice stories that happened that I'd included in my earlier attempt, now mostly deleted. Some years were really good at school. Two stand out and unlike prior experiences where they moved our child from school to school, never twice the same, we did have two good years in a row and at the same school.

The teacher was Karen Staley and while we disagreed with some of what she wanted to do with Athena (trying to teach her to tell time, for example, which was way beyond her then), it was minor really and she ran a class with a team of aides that had gelled well and was run exceptionall well. It worked and worked pretty well and Athena was so happy to go to class. I remember one day we were taking her to the door to go out with me, as I was driving her to school since we missed the bus, and she was dressed up and ready and go the door and suddently stopped me there. She ran back and got a new toy we'd bought her that she really liked a lot and then was ready to go. I drove her to school and got there not too late (only 5 or 10 minutes after class started) and walked her into Karen's class. Athena immediately ran over to another student in the self-contained class and handed the student the toy. I can't tell you how much that filled me with emotions. Athena had remembered that she'd wanted to share her toy with someone at class and I have to tell you that having friends in school is one of the real benefits there. It's so wonderful. And to have some years where we simply couldn't let her go makes me so very sad for her, about the possibilities for friends missed. Also, it told me too that Karen really had a wonderful class for Athena.

Another story that now comes to mind with a class run by Staley's assistant the year after Staley left school, one which Becky experienced, is when there was "pet day." Athena got to bring in a bunny rabbit. She immediately went over to the most disabled child there, a girl with Rett syndrome who was in a wheelchair and not expected to live much longer (failing), and handed her the rabbit to hold. This was a girl who was biting her own lips and they had to do things to help control that, too. Serious case. (This was the case where I wanted Becky's input and could even steady myself to ask.)

So it is all so mixed up with me. On the one hand, such dismay. On the other, such wonderful and glad things that you want more and want to cry about not having access to, otherwise.

The schools have so much power over us, emotionally as well as otherwise.

It turns out that the last year with Karen was because Karen was quitting. She and her husband filed suit against the State of Oregon for gross failures on another score. Something else that affects our lives, now. The so called "Staley Law Suit" in Oregon. Look it up, sometime, on google.