Early Intervention (long)

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Registered: 03-31-2003
Early Intervention (long)
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Wed, 02-01-2006 - 1:33am

I was reading the thread about the Super Nanny show (a bit late). There is some stuff in there about early intervention, and I've been wondering a lot about that. It seems like everyone here has had some kind of EI for their kids. So, if you are up for a bit of a long ramble, I'd like to share our "lack of EI" story.

When my son, David was 4 years and 9 months, he entered kindergarten. He had never been to preschool, because I never thought he needed it. He taught himself to read when he was two, and knew how to play with his buddy. He had developed what we considered "discipline problems", but we thought kindergarten and maturity would help. From what I had learned, if you wanted to put your kid in preschool, you had a choice between very expensive preschools that where 5 days a week for all day...or the city's parks and rec preschool which is much more cheap and basic. I didn't like the sound of either of those options, but did enroll him in a few activities, where he acted rather strange. At that time, we had a "family physician" rather than a pediatrician. When I took David in because I was concerned about the fact that he tuned us out a lot, the doctor just said, "kids do that." When I took him in later with the complaint that, "he is immune to all forms of dicipline" the doctor told us that we ought to look in the yellow pages for a therapist. When we went to a therapist, she said it sounded like we were doing all the right stuff, but we ought to take him to a developmental pediatrician. We called the one she recommended, but he was booked up for the next year. None of these people ever once mentioned "early intervention" through the school district.

Anyway, he started kindergarten as one of the youngest in the class, because of his birthday, and he acted very strange. He licked the teacher and other kids, and did all kinds of inappropriate stuff. The teacher never once recommended that we have him evaluated, let alone the existence of "early intervention." She told us that the school system is legally required to keep him in kindergarten if I want, but she highly recommended taking him out of kindergarten and putting him into preschool (parks and rec one would be fine) and give him another year to mature.

So we did, and it worked out well, but he continued to get wilder and weirder at home. The next fall, in kindergarten again, the teacher (different from last year) said she was concerned about him, and she scheduled an evaluation. With one psychologist for the entire district, it took several months. He was well over six years old before that was done, and then we still had to go to outside for a dx (the school psychologist isn't qualified to dx). We dumped our family physician and changed our insurance to a PPO. We found a pediatrician who was very helpful and got us in with a developmental ped who could see us right away (since a doctor referred us.)

Now...why is it that nobody ever told us that the school district was required by federal law to do some "early intervention?" When you read this, does it seem like someone should have at least mentioned it? And, in all fairness to the school district, I can see why they don't advertise it, because resources are stretched so thin. Last year, they even were threatening to have one principal for every two schools, but we voted for higher taxes to keep that from happening, thank goodness. I'm not sure what they would have or could have done for David, but at maybe it could have been helpful. Even now that he is 8 years old and in the 2nd grade, no one has ever acknowledged that there is such a thing as "early intervention"...until I specifically asked my pediatrician about it in regards to my 4-year-old.

So, what do you all think? Thanks for reading this all, if you managed.

Evelyn
David, 8, AS, BP-NOS
Nathan, 4

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Registered: 04-07-2003
Wed, 02-01-2006 - 9:50am

Your experience is part of why my family is so late in getting dx. For years I told people around me (pediatricians, friends, teachers) that my kids seemed a little "off." I was always told "kids are like that," or "they'll catch up," or something similar. We didn't do traditional preschool (expense) but did do in-home preschool with a few friends, each mom rotating weeks as teacher. None of them ever noticed any problems.

I did have one acquaintance who's an OT who said she thought I ought to get an eval for my oldest dd. I asked school to do eval. They did "pre-eval" and said they didn't see anything worth pursuing. Admittedly, my kids' issues aren't things that generally affect their schooling to a degree that the school is willing to intervene. They do well academically, and they're generally well-behaved in class. However, both NLD kids always brought home cutting/pasting homework 'cus their coordination/organization prevent them from getting motor-skill-type tasks done, and ds often gets incompletes in other classwork when he can't get his brain organized enough to even begin work, tho' on another day he can finish the entire assignment. They also couldn't tie shoes, button pants, etc., but we'd just found clothing that was easier for them to manage, so they could be independent at school (toileting, etc).

We also have friend whose dd has low-functioning autism. My ds and their nt ds are friends, and even that mom never noticed or said anything to me about my ds. In fact, she was critical of our delayed potty training.

It wasn't until a few months ago when I'd had a particularly bad day with ds that I sat down and wrote a letter to the pediatrician outlining about a dozen symptoms that ds had that ped finally sat up and took notice, agreeing there were some developmental delays and that we ought to get them checked.

I guess when the symptoms are addressed or seen individually, they're not obvious as a problem. When they're seen as a part of a whole package, it is more clear that there's a problem. Also, when the problems aren't "severe," it's harder to distinguish between little kid silliness and true developmental delay. The only EI we had was through the county for nt ds who had speech therapy (no speech at 2yo), and that was only after we pushed the pediatrician to direct us to help. I don't know why she was reluctant to recommend EI. I'm still not sure how I feel about whether EI would have done much for my two NLD kids. They had enough anxieties about separating from me, I'm not sure whether EI would have stressed them out too much.

One final thought: the book "Bridging the Gap" about NLD mentions how common this experience is in late Dx and how everyone always dismisses the concerns even tho' the parent "knows" something is wrong. With NLD being similar to AS, I would imagine that scenario is common with AS kids (and PPD & HFA), too. It's awfully frustrating, but looking back, I don't know how I (or those around us) could have done anything differently. Even my ds teacher now, who is very supportive of us, really didn't know anything about the disorder, so while she's supportive, I don't know that she would have been able to direct us to help if we didn't already know what was going on. I suspect that a lot of children who could benefit from EI are just seen as behavior problems because there is not enough education to realize these are medical problems that need EI.

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Registered: 02-20-2001
Wed, 02-01-2006 - 10:56am

You have hit upon some points that I have often thought about.

 


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Registered: 08-26-2005
Wed, 02-01-2006 - 3:48pm
Evelyn,
I often wonder if Jake would have ever been spotted had it not been for a Dateline episode DH and I watched about Autism. On the show a family with 4 boys(all with ASD) had very similar behavior as babies to the way Jake was at the time(11 months). The mom talked about the fact that all of her boys would become entranced by spinning objects, DH and I just looked at each other and that was my lightbulb moment. Up to that point my ped kept telling me he was just a "placid baby who didn't need a lot of attention" and not to worry about the fact he still couldn't crawl because all kids do it in their own time."One doctor in that practice did see something strange in his development but said much to my horror,if it's anything it's Aspergers so don't worry about it, he might not have a prom date but he could be a millionare some day!Needless to say I went home in tears.Never once did a doctor suggest E.I. I learned about E.I from my next door neighbor at the time who's son was already getting services. Thankfully I followed my own instincts and he has been in E.I since he was 13 months old. At 20 months a developmental ped told me there was nothing wrong with him and it wasn't until he was 26 months he finally got his diagnosis. I feel bad for you that all the people who should have picked up on it never did. I know if I were in a similar situation I probably would be questioning and doing the what if's?
Teresa
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Registered: 03-26-2003
Wed, 02-01-2006 - 4:46pm

Evelyn,

I think there are a couple things at play here. I have been there too. The only reason my kids recieved any kind of early services is because I worked in the field and recognized the differences myself. I actually had to pay for a private eval for Cait when she was 3 because our ped refused to refer her saying I was imagining things because of my job and I was an over nervous parent. I had believed him and she should have recieved services by the age of 2 if things were different.

I think one of the biggest changes and why so many kids are in early intervention now is how many advances have been made in recent years as far as diagnosing younger. It really has been a push for the past 7-8 years or so.

The CHAT (checklist for autism in toddlers) wasn't available until my kids were past that age. In fact the first time I saw it was when Emily was nearly 2. And the first one only really addressed classic autism. Only recently in the past couple years have they created a modified one which may catch more children younger.

Then it is a verbal issue. Most kids that were referred young when I was doing early intervention where non-verbal at about 2 or older. It was much harder to have a child seen or recognized as different if they were verbal.

It is getting better now than it was then but it is still hard to identify young kids, particularly those that are verbal or don't have any obvious delays or behaviors.

Mike had obvious autistic like behaviors at 3 and before. And even though we took him to a neurologist he was initially diagnosed with SID and auditory processing disorder stating that she felt that these things caused his autism like symptoms even though at this point his sister was already diagnosed. This continued on until he was 7, people noting the symptoms but no one diagnosing autism because of his stong verbal skills (then) and lack of understanding of HFA/Aspergers. Instead he was diagnosed a million other things.

He didn't get early intervention either and not for lack of trying. I think now he would but then he didn't qualify because though his social skills, self help, and behavior were of severe concern he did not have cognitive or language delays. He was delayed in every other area but because of those 2 things (typical of AS) he didn't qualify.

don't beat yourself up. We couldn't have done any better than we have.

Renee

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Registered: 05-16-2003
Thu, 02-02-2006 - 7:07am

Tina,

I totally agree w. you about the 2.5 year old visit. In Jack's case, he DID have one though. But I know a lot of doctors here don't do it.

I would add that the American Acad of Peds has a campaign underway to get the doctors to ask the "right" questions at these visits: language, play skills, check eye contact etc. There is no excuse.

A friend of mine had a dr tell her her DS (who it turns out has HFA) was "fine" and she then waited ONE YEAR for an appt at a well-known clinic. It makes my stomach churn (hers too).

But we've all done the best for our kids based on what information we had at the time. There's no looking back, only forward, right?!

Cathy

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Registered: 04-08-2003
Fri, 02-03-2006 - 3:28pm

HI,
You are talking to a mother whose struggled for 5 1/2 yrs and finally is heading towards a asperger diagnosis. His previous school is where I first contacted to get EI, but they refused.
Not only did they refuse, they suspended Sravan numerous times. Finally, I got so mad and we moved to a different school district. Not that I did not suffer here, but the entire school was also looking so many ways to help Sravan. Finally, Principal called for asperger test and the physocologist thinks he is. Now the Principal doesn't want to wait any longer and is pushing the school district to get all the paper work required for him to get services. I am glad I moved to the right school district. My son lacks social skill in a major way. That is where he gets into trouble. His class teacher even contacted another school in the district and found out there is this lady who works on asperger children with social/emotional problem 1hr/day. I should be thankful now, but I was miserable for so long. My son is going to be 9yrs old soon.

take care,
Anandhi.