Help! 504/tone of voice/sensory issues

[Liberty Belle]

My son is 7 and in second grade. He's been diagnosed with ADHD and SID and almost certainly gifted (99% on MAP tests, plus he fits the criterion), we just haven't had IQ tests done.

Because of his sensory issues, he is very reactive to loud, angry, annoyed voices. He will be fine, but if I or a teacher starts to yell at him or get overly stern, he reacts with bad behavior.

In his 504 it says the teacher should use a calm gentle voice. Last year's teacher did not at all. She also did other things (ripping up his paper in front of him, etc) to escalate his behavior. His teachers this year seem to realize this and have been very good about it. He's had a great year so far.

Until today when he had to go to the office. His principal, teachers, and my husband and I decided that he could keep some diet mountain dew in the office and if he felt like he needed an extra zip of caffeine to help him calm down, he could come up to the office and get it (with teacher permission, of course).

Well, apparently this morning he did and the principal was not there, so the counselor was in charge. She wasn't told anything about the plan, so she denied him. He got upset. She raised her voice to him. And it escalated from there. When I talked to him on the phone and asked him what was going on, he told me and said her voice "was full of temper" and it upset him. I don't even like talking to this counselor because she sounds rude even when she doesn't seem to be upset. She's also said several times that he's using his diagnosis "as an excuse" and she doesn't say it in a nice way.

I don't know if we should modify his 504 to emphasize how crucial tone of voice and volume level is with him. If so, how should it be worded? Do any of you have to deal with this?

 

[Liberty Belle]

I'm the only one with this problem?

You know, when my son was first diagnosed, it was such a relief because now we knew how to help him. Now, though I realize it was false hope. This is so frustrating and heartbreaking.

I just don't know what to do.

 

[kirstenb1]

I wish I had some experience or advice, but just wanted to help you bump this up, in case someone else does.

 

[JulieWent]

I'm the only one with this problem?

You know, when my son was first diagnosed, it was such a relief because now we knew how to help him. Now, though I realize it was false hope. This is so frustrating and heartbreaking.

I just don't know what to do.

What to say to help? First, it isn't a false hope, but it IS a constant battle. You have a powerful tool in your son's 504 plan. What I have found over the years, though, is that that powerful tool is what I must use time and again to move things forward.

DS is now 15 -- diagnosed with NLD (sensory issues -- especially sensitive to people's tones like your son -- fine motor skills problems, and extreme intelligence) when he was 7. He has come so far and has had some truly extraordinary teachers who understood EVERYTHING about him. He has also had a few teachers who have forced me to pull out a copy of his IEP and explain the significance of this document and its accommodations. One or two support personnel -- people at our district's central office -- have even had to hear that from my attorney. But gradually, DS has made progress and become a fairly well-adjusted high school sophomore who is currently driving me crazy while listening to a football game.

In dealing with support personnel who do not work with your son on a daily basis but who have the potential to do great damage nonetheless, I would suggest a brief conversation. The counselor is not someone you necessarily need to be gentle with. Explain to her that you do not care what her opinion is of your son's 504 plan. The point is that it is a legal document and that you expect her compliance with it. You can even do this in an email that you -cc to the school principal. Keep copies of any emails that you send and note any conversations that you have.

A final suggestion might be that you have your son's teacher create a specific pass that gives your son permission to go to the office for a sip of Mountain Dew. That would specify where he is going and why he is going there. In this way, there would be no question for anyone he might have to deal with in the office or on his way there. (My son has always carried a flashpass that states: To the resource room. He uses this if he gets in a high stress situation that he has to get out of immediately. As a note of encouragement, he used to need it a lot. The past few years, he's used it maybe twice.)

Hope you find something here that can be useful to you, even if it's just the fact that YES, there are others who are where you are. I wish I could tell you that it would always be easy. Maybe if I tell you that it will definitely be worth it?

Julie

 

[bookwormde]

What you describe is not only a child who has sensory issues, but is living in a world of heightened anxiety.

Get your developmental pediatrician to do a WPS SRS evaluation to do a first screen for social differntials and an auditory processing evalustion for EF.

This is the reason why a 504 is typically not adaquate, if does not have the same "force of law" as as an IEP.

bookwormde

 

[Liberty Belle]

What to say to help? First, it isn't a false hope, but it IS a constant battle. You have a powerful tool in your son's 504 plan. What I have found over the years, though, is that that powerful tool is what I must use time and again to move things forward.

DS is now 15 -- diagnosed with NLD (sensory issues -- especially sensitive to people's tones like your son -- fine motor skills problems, and extreme intelligence) when he was 7. He has come so far and has had some truly extraordinary teachers who understood EVERYTHING about him. He has also had a few teachers who have forced me to pull out a copy of his IEP and explain the significance of this document and its accommodations. One or two support personnel -- people at our district's central office -- have even had to hear that from my attorney. But gradually, DS has made progress and become a fairly well-adjusted high school sophomore who is currently driving me crazy while listening to a football game.

In dealing with support personnel who do not work with your son on a daily basis but who have the potential to do great damage nonetheless, I would suggest a brief conversation. The counselor is not someone you necessarily need to be gentle with. Explain to her that you do not care what her opinion is of your son's 504 plan. The point is that it is a legal document and that you expect her compliance with it. You can even do this in an email that you -cc to the school principal. Keep copies of any emails that you send and note any conversations that you have.

A final suggestion might be that you have your son's teacher create a specific pass that gives your son permission to go to the office for a sip of Mountain Dew. That would specify where he is going and why he is going there. In this way, there would be no question for anyone he might have to deal with in the office or on his way there. (My son has always carried a flashpass that states: To the resource room. He uses this if he gets in a high stress situation that he has to get out of immediately. As a note of encouragement, he used to need it a lot. The past few years, he's used it maybe twice.)

Hope you find something here that can be useful to you, even if it's just the fact that YES, there are others who are where you are. I wish I could tell you that it would always be easy. Maybe if I tell you that it will definitely be worth it?

Julie

What you describe is not only a child who has sensory issues, but is living in a world of heightened anxiety.

Get your developmental pediatrician to do a WPS SRS evaluation to do a first screen for social differntials and an auditory processing evalustion for EF.

This is the reason why a 504 is typically not adaquate, if does not have the same "force of law" as as an IEP.

bookwormde

Thank you both very much. Bad days are just so bad that sometimes it feels like I almost want to give up and homeschool him. He doesn't want that, though. He's a social kid who loves being around other people.

Ok, bookwormde, I'll talk to the pediatrician. He only has his pediatrician and the clinician who diagnosed him with ADHD and SID. Actually he's not even officially diagnosed with SID yet. His clinician is positive he has it, though, and said he thought it was "huge" with him. We're awaiting the SID eval - it's taking so long.

So, I should talk to his regular pediatrician or the clinician? Or should I make an apointment with a psychiatrist? I did ask his principal the other day if the school could do an IQ test. He's just so smart. I really feel that's a big part of his problem.

So...WPS SRS eval and then an auditory processing eval. Ok. Thank you so much for your advice. I'm just kind of lost.

Oh, about the anxiety. The clinician and his pediatrician both agreed he might have anxiety, but really haven't suggested anything. What do they normally do for children with anxiety? My husband and I both suffer from GAD, so it's no wonder he'd have it.

 

[bookwormde]

It is so rare to find a psychiatrist that has any competency in this area that it is not worth the trouble and most do much more damage than good. A pediatric neurologist of a developmental pediatrician with experience with ASD and other neurological variations is your first step. Sometimes you can find a good psychologist also who can help guide you and support your child. Going to a major medical center with a specialist group is the best bet.

If you are in eastern Kentucky you might want to make the trip to Kennedy Krieger (Johns Hopkins) in Baltimore. Otherwise University of Kentucky should have some good resources.
The best way to greatly reduce anxiety is to have everyone in your child's environment understand his needs and adapt and accommodate him while he gets the skill sets thought that he needs for function without exceptional effort and uncertainty. Being self aware is also a big help, as long as it is presented a set of differences that include both gifts and challenges.

It all starts with an accurate diagnosis and classification and then a good IEP at school and a well educated family and friends.

bookwormde

 

[JulieWent]

I will tell you that it is often very difficult to get an IEP for a child with a high IQ who is performing adequately in school (gradewise). Though our son is diagnosed with NLD (non-verbal learning disorder) and struggled socially and emotionally, he only qualified for an IEP under the speech / language category for years. Only when his anxiety became so pronounced that it began to affect his performance in the classroom AND when we had him OFFICIALLY diagnosed as OCD were we able to qualify him for an IEP under another category that dealt with the social / emotional / learning aspects of his disabilities.

Just rambling here, but I would definitely suggest you seek a diagnosis from a neuro-psychologist or qualified diagnostician. We had to sink lots of money into getting one, but we have NEVER regretted it for a minute. It helped (and still helps) guide us in preparing our son and our selves for the road ahead.

We have had much good luck with psychologists in helping our son with his OCD and anxiety. I highly recommend going that route. There is no telling where we'd be if our son didn't have both a good therapist and a good psychiatrist. (We don't live in a major metropolitan area, but we do live in a college town. That helps.)

Good luck in your search.

Julie