Our school has an 8y.o., 2nd grade student with severe autism - non-verbal (for the most part), barely toilet trained, hypotonic, with an unspecified seizure disorder (he had one grand mal seizure at age 2 and is on maintenance meds and has rectal diastat ordered).
The parents have very strange ideas about helping their son - he gets no services outside of school (no ABA or Behavior therapy of any kind), they hardly ever follow through with any recommendations from the service providers here despite copious amts of evidence that what they are doing has positive outcomes for him (I fully believe that he could at least be somewhat verbal and totally potty trained if given the opportunity), and they don't ever answer the phone or respond to emails.
Recently - the last 3 weeks or so? - the student has been "holding his saliva" - letting it collect in his mouth and refusing to swallow it unless prompted by his 1:1, and sometimes just letting it drool out of his mouth. Now, I have evaluated him multiple times at this point. I can't really get a good look in his mouth, but he has no lymph node enlargement, and from what I can see, his throat looks fine. He's been afebrile every time I've seen him. One of his ears was completely impacted with wax and he has seemed congested in the last few weeks as well. Last week, he nearly choked on a carrot because he also has stopped chewing certain things.
The service providers keep coming to me to report that all this is happening. We have reported our concerns to the parents through voicemails, in person, and via email, recommending MD evals (at first for the spit-holding and impacted ear) and a swallowing specialist (specifically after the carrot incident), but they are basically refusing to take him to any of it, I think partially because their pediatrician has retired and they don't want to find a new one right now and they truly don't see anything wrong with him.
On top of this, Mom is between 6-8months pregnant.
So, I'm trying to suss this one out - is he sick or does he have allergies? Is this a regression due to the impending baby? Or is it possible he has had some neurological damage due to an un-witnessed or unreported seizure? I do not have permission to speak with his neurologist and as I said before his PCP has retired and there are no other providers familiar with him that we're aware of. The big question for me is what is going on and what can I do about it? Does anyone have any thoughts? I kinda feel like the service providers are all looking to me to solve this and I don't know what else I can do other than file for neglect. Am I missing something or is that what needs to happen?
Agree with Urban... CPS can offer other avenues of assistance. Sounds like some parental education is absolutely called for, and CPS can assist with that. I would make the call, and let them sort out if there is follow up needed or even a case to investigate.
So, I think ultimately, the parents don't see that there is anything "wrong" with him (not that anyone with autism has anything "wrong"...) so they don't see the value of "fixing" his behaviors. I don't know if this is a cultural/religious thing or what. I think they think that he was born this way, there is nothing wrong, so why do we need people in our home telling us what to do to "fix" him. They don't see that PT/OT/ST/ABA are actually improving his quality of life (even though they benefit from it). They are very wary of medical/therapeutic intervention in general it seems, with the exception of the seizure disorder.
I'm fairly certain that if the school didn't insist on an IEP with a 1:1 and services, they'd be perfectly happy to have him just be a part of the regular classroom running amok.
They ignore the emails and phone calls because they pick him up at the end of each day and so they can speak with us in person, but have time to come up with an excuse and control the situation. The saliva thing, for example, is his way of having fun or his "boyish/impish" ways and can't be indicative of anything more seriously wrong, according to them, despite us stating our concerns. They may see my evaluation as something that can replace an MD visit, but in this situation I have made it clear that I DON'T know what's going on and that they should bring him for a more thorough look. They just don't see the point in that.
We (school staff) feel pretty certain that if/when we file, they're going to pull him from the school, which of course is their perogative, but we also worry what will happen to him if that happens.
Specializes in Psych, Addictions, SOL (Student of Life).
On 5/29/2019 at 11:05 AM, k1p1ssk said:
I actually got a great look in his mouth, just not his throat, and his mouth looks clear of sores; And he actually gets great dental care through an experienced dentist, so I am less likely to suspect an oral/dental problem.
I'm wary to just go ahead and file, as I don't think he is in any real danger as of yet and I wonder about the level of undue stress that would cause - he has no signs of infection or other signs of illness and I kinda get why they don't want to take him to the doctor... I myself kinda think they're just going to say there's nothing wrong, it would just make me feel better to hear that coming from a doctor. There aren't really any other safety concerns, other than the choking hazards, but we literally told the family what happened and they stopped sending foods like that, so in a lot of ways they are listening to us.
Sigh...
I don't know what state you are in in California you must report "Any reasonable suspicion of abuse." You can also call CPS directly describe the situation and they will tell you if a report is warranted!
I agree with the idea of calling cps. He is not getting the medical/psychological/psychiatric care that he needs or that is recommended. That is medical neglect. It almost sounds like they just let him do what he wants (no potty training, etc). That's not good for anyone.
Specializes in Psychiatry, Community, Nurse Manager, hospice.
20 hours ago, k1p1ssk said:
So, I think ultimately, the parents don't see that there is anything "wrong" with him (not that anyone with autism has anything "wrong"...) so they don't see the value of "fixing" his behaviors. I don't know if this is a cultural/religious thing or what. I think they think that he was born this way, there is nothing wrong, so why do we need people in our home telling us what to do to "fix" him. They don't see that PT/OT/ST/ABA are actually improving his quality of life (even though they benefit from it). They are very wary of medical/therapeutic intervention in general it seems, with the exception of the seizure disorder.
I'm fairly certain that if the school didn't insist on an IEP with a 1:1 and services, they'd be perfectly happy to have him just be a part of the regular classroom running amok.
They ignore the emails and phone calls because they pick him up at the end of each day and so they can speak with us in person, but have time to come up with an excuse and control the situation. The saliva thing, for example, is his way of having fun or his "boyish/impish" ways and can't be indicative of anything more seriously wrong, according to them, despite us stating our concerns. They may see my evaluation as something that can replace an MD visit, but in this situation I have made it clear that I DON'T know what's going on and that they should bring him for a more thorough look. They just don't see the point in that.
We (school staff) feel pretty certain that if/when we file, they're going to pull him from the school, which of course is their perogative, but we also worry what will happen to him if that happens.
Given this information, it sounds like you are not ready to call CPS.
Am I correct in assuming that you have the opportunity to see the parents every day?
Given that you want to improve your relationship and develop rapport, which I deeply respect, would you be more comfortable talking more with these parents? It seems like they have a different point of view.
Could you be the one to transfer him to his parents at pick up?
Then be frank about your worst fears and use the authority you have. "Mrs. Somebody, I am concerned that Benny could choke given the changes in his swallowing. I really must insist that you bring back this form stating that he is okay to be in school and has been evaluated for new problems related to his swallowing. Here is the form to be completed by the doctor. Pickup will happen in my office until the form is finished. Do you have any questions for me?" Be clear in what you want from them.
Parents could get angry and might feel like you are being pushy, but those things are fixable to the relationship. Calling CPS is not. Maybe you will have to do it, but it seems like you want to try everything you can to preserve the relationship first, which really is so much better for this child if it is possible.
If mom has to pick up in your office, it will be harder for her to downplay the problem. She may still think you're wrong, but at least she will comprehend your seriousness.
If all else fails, and you decide that the risk of this child not getting evaluated for this problem is greater than the risk of a broken relationship with the parents, then that counts as suspicion of neglect, and not just your disagreement with the parents decisions.
As far as I know, there are no laws that mandate a child with Autism must receive services outside of school. Should they? Yes. But even if it was a law, in my experience (and especially in my geographical area - I should know, I was the care coordinator for the only developmental pediatric office in my half of my state) there are not enough ABA therapists to provide even the recommended minimum amount of services these children should have. So right now, we would only be filing on the basis that we think he should go to the doctor because there *may* be something more seriously wrong, but the parents disagree. If I filed on every parent who didn't bring their child to the doctor when we thought they should I'd be on the hotline all day long.
While I am completely prepared to file in the event his symptoms get so bad I do feel he is in danger, I am very appreciative of what @FolksBtrippin has said... I do not suspect abuse, and an allegation of neglect is negligible at best. I would really like to continue to foster this relationship, and make it about the child's safety in school. I really love the language "We must insist...." I think its direct and firm, but not aggressive.
Thank you all for your perspectives on this. Its exactly what I Needed to help weed through this all. It will be difficult to get it all done with only 2 weeks left of the school year, but we will persist!
As school nurses we all have access to information from physicians who treat our students:
"Does the HIPAA Privacy Rule allow a health care provider to disclose protected health information (PHI) about a student to a school nurse or physician?
Yes. The HIPAA Privacy Rule allows covered health care providers to disclose PHI about students to school nurses, physicians, or other health care providers for treatment purposes, without the authorization of the student or student’s parent. For example, a student’s primary care physician may discuss the student’s medication and other health care needs with a school nurse who will administer the student’s medication and provide care to the student while the student is at school. In addition, a covered health care provider may disclose proof of a student's immunizations directly to a school nurse or other person designated by the school to receive immunization records if the school is required by State or other law to have such proof prior to admitting the student, and a parent, guardian, or other person acting in loco parentis has agreed to the disclosure. See 45 CFR 164.512(b)(1)(vi)."
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halohg, RN
217 Posts
Agree with Urban... CPS can offer other avenues of assistance. Sounds like some parental education is absolutely called for, and CPS can assist with that. I would make the call, and let them sort out if there is follow up needed or even a case to investigate.