Any advice on how to handle school?

[Satara]

Hello everyone,

 

Liam is heading back to school tomorrow and although I have done everything I can to get him a good teacher/class get his educational assessment underway I still feel completely unprepared for it. He did great in K/grade one and the first half of grade two then things went horribly wrong. I don't know what to do. He cycles throughout the day. Giddy goofy/angry raging/anxious/and sometimes his sweet wonderful self. He usually manages to hold it together in front of other people but by the end of the last school year he was shutting down he couldn't take the noise and movement of the other kids or the constant social interaction.

 

I am absolutely dreading him having one of his rages at school (this hasn't happened yet). He's lost friends because he fixates on weird topics and won't stop talking about them even when people start to walk away ie his main ones are flying and everything related to flying/clocks (the inner workings), Calvin and Hobbes. Explaining jet propulsion to 8 year olds who aren't blindly interested. It kills me to see him floundering. I am praying that he will be able to continue to go to school this year. Any suggestions?

[Dedee]

I really wish I had suggestions for you. School struggles seems to be a common theme, especially recently as we all are sharing the horrible reality of heading back. I just want to say how sorry I am to hear your pain as describe your son. It is so hard to watch our children suffer. It would be so much easier if we could take it on ourselves. I am sure there are others here with wonderful ideas. So many have been through similiar situations. Best of luck this school year.....

 

Dedee

[peglem]

Is it possible for them to offer him a "safe place" to go whenever he feels he needs a break?

[Satara]

Thank you for responding so quickly. We are working on him being able to leave when he feels overwhelmed but we are also dealing with teacher's job action. They are threatening to go on strike so they are not totally receptive to any extra things. I have actually been hoping they would strike for a couple of weeks just to buy me some time to get some lab results and work on stabilizing him a bit more before throwing him back in.

[MomWithOCDSon]

Satara --

 

Our DS had some of those same characteristics at that age, so I know how tough it can be. At the time, we didn't know it was PANDAS, though, and kept sort of circling around an Aspberger's classification. He'd been diagnosed with OCD, but his fixation on topics of his choice (in our case, all things computers/electronics) and his inability to read the social cues of his friends that they'd heard enough or were entirely disinterested from the start, were concerning.

 

His teacher should be able to help guide him with some of that social appropriateness stuff, and if the educational assessment reveals these behaviors, then you would think he might qualify for some social work sessions that will help with the social side of things also. You can reinforce things at home, too; there are some great books out there about things like Aspberger's which, even though I don't consider my DS to have it nor yours either, the suggestions, techniques, etc. for helping kids "be better friends," etc. may still come in handy for you. They did for us.

 

I know this isn't a whole lot of consolation, but try to keep in mind that, as the PANDAS treatment increases your son's health, the severity of these behaviors will likely subside, especially if you calmly and constructively reinforce the desirable behaviors now so that he doesn't settle into bad habits that the PANDAS instigates. Just plain growing up will help, too.

 

Peglem's idea to give him a "safe place" to shelter from all the chaos when he needs to downshift is a great one; perhaps the school psychologist or social worker could offer their office or a rarely-used conference room or something?

[Satara]

This is all soooo bizarre up until Christmas last year he was perfectly fine and now he's a mess of weird symptoms. I feel like I'm beating my head against a wall with our medical system I keep getting referred from dr to dr with no actual help. The only thing they have suggested is putting him in an inpatient facility for observation for a month. How we can go from a brief assessment to basically committing him is beyond me.

 

The weird thing is that he is the most charming engaging sweet wonderful kid half of the time and he can read social cues then he gets into some weird cycle where he goes into manic mission mode where he fixates on topics and endlessly goes after what he wants with us saying no a hundred different ways. I hope I can get somewhere with the doctors this week. This forum has been such an amazing help and has prevented me from thinking I am going crazy. I read the report from Liam's assessment and the dr got tons of facts wrong including his hair color/symptoms/my husbands family history. What the heck? How can a psychiatrist make so many mistakes on a five page report. It just shows he wasn't really paying attention.

 

Thank God we have an amazing pit bull of a principal who is going to bat for Liam. She is retiring after Christmas so we are trying to get everything in place before then. We are trying to set up some kind on counseling through the school but because our school is small we don't have a lot of hours allotted.

 

Do you find food triggers behaviours? What is your treatment plan like? What successes have you seen? Sorry if this is kind of nosey but I need to grasp on to some hope that we will have our son back at some point.

[MomWithOCDSon]

Thank God we have an amazing pit bull of a principal who is going to bat for Liam. She is retiring after Christmas so we are trying to get everything in place before then. We are trying to set up some kind on counseling through the school but because our school is small we don't have a lot of hours allotted.

 

Do you find food triggers behaviours? What is your treatment plan like? What successes have you seen? Sorry if this is kind of nosey but I need to grasp on to some hope that we will have our son back at some point.

 

Okay. So was the main point behind the psych evaluation getting him a 504 Plan or an IEP within the school district? And even though the psych didn't do a good job (I would call him out on that, by the way -- I'm sure the testing wasn't inexpensive), did the report qualify your son for services in the education district? Sorry, as I'm not sure where you're residing (the internet is tricky like that), but assuming you're in the U.S., a 504 Plan will give your son accommodations in the classroom to try and make the school day easier for him, but it doesn't grant him any additional psychological or sociological services at the school's expense, as I understand it. Only an IEP (Individualized Education Plan) can do that. So it would seem to me that's what your principal is aiming for.

 

Even then, I think what's alloted via an IEP is something fairly nominal in terms of time, like two 40-minute sessions per week? And even then, if the district personnel isn't fairly well versed in the issues, the benefit of that counseling is questionable. Unless, of course, because of the size of the school/district, the personnel isn't available in-house and then the district would be compelled to cover your costs of acquiring counseling outside the school itself. We have always secured the services of a private therapist, in addition to what the school can provide; it just didn't seem possible that the school personnel had the skill set or tools to help DS adequately.

 

At your son's age, mine started with a 504 Plan, which granted him certain accommodations, like potty breaks when he needed them, untimed testing, extended time for homework, etc. But he didn't get anything other than occasional visits with the school social worker or psychologist, and those were more for his "escaping classroom chaos" accommodation that actual counseling. When he got into junior high school, though, it became apparent to us that he needed more help than the 504 gave him, and we allowed it to be transitioned to an IEP. The IEP technically classifies him as a student in the Special Education program, but because he is academically capable of all mainstream coursework, he stays in the regular classrooms and takes classes just like all his friends. The difference is that, in addition to the accommodations like extended time for tests and homework, etc., he also has a case worker in the school who's job it is to advocate for DS with the other teachers and help coordinate and organize his academic day. Then DS also gets two social work sessions weekly: one individually, and one with a small group.

 

In either the 504 or IEP, the accommodations are specific to the kid's needs and are for the purpose of "bringing the child even with his peers," not giving them any advantages over the classmates; that's something some schools can be touchy about. So, our DS has the following accommodations: extra time for tests and homework, additional excused absences for doctor's and therapist's appointments, some assessments taken verbally rather than requiring them to be hand-written, keyboarding assignments rather than hand-writing them (his handwriting suffers in exacerbation), no being marked tardy if he arrives to class a little late because he had to stop in the washroom, not required to share a locker, has a locker at the end of a row (somewhat isolated), allowed to arrive to school 10 minutes early and go to his locker before the throng arrives, etc.

 

As for food triggers, I think that's entirely possible; if you run a Search here on the forum, I think you'll find a few threads on the topic in which parents have found their kids to be sensitive to various things, from gluten to dairy to MSG.

 

I know you're thrown off by the sudden changes in your son and you want him "back," immediately if possible. Take a deep breath and try to see if you can tackle one or two issues at a time, though. You'll burn yourself out trying to address all these complex issues at once!

[Satara]

Hello Nancy,

 

We are in Canada.

 

Thanks for the information. The assessment he had was through the Children's hospital not his educational assessment. I'm not too hopeful about him getting his educational assessment any time soon (although it was recommended by the psychiatrist at Children's and the principal is actively pursuing it). There is often a waiting list of 8 months.

 

I am taking my 'marked up' version of Liam's report to the GP and the mental health team we have been referred to to try to clear up the mistakes. We are awaiting the results of his allergy and gluten/casein tests hopefully they will come in in the next couple of weeks. I know what mean about burning out I did it a while ago and had to take some time off of all of this but due to the complete lack of support from the "medical team" I feel like I'm the only one fighting for him and as time goes on I am seeing less and less of him and more of whatever is taking over his brain. It's horrifying to see him slipping away. I feel like if I don't get on this I may lose him permanently and I couldn't live with that if there was something I could have done. I am making sure I go out with friends and do things with my sons' and my hubby but this all needs to be addressed as well. Our other son had onset of something at the same time but his is presenting more like Tourettes with mild mood swings not nearly as horrifying as Liam's symptoms but I feel like there has to be a link. Why else would they have onset at the same time. They are three years apart in age and they had strep/pneumonia last winter and our dog had tics after camping last summer so there are a lot of avenues to explore.

[Satara]

Well we got through the first day of school without any incidents. I gave the teacher the report from the private OT and had a chat with her after school. She seems great!

 

A couple hours after I got home she called and asked if I could come to an appt. after school on Thursday with the outgoing principal/the new principal/a teacher from the resource room/our teacher and one other person who I'm not sure of. HOLY COW! I'm not sure whether to be excited that things are happening or to be scared stiff that so many people are involved. My biggest fear is that they will say he has too many problems and needs to be at home (this happened to a friend of mine). My hubby is working so I will have to go face this panel by myself. Man this whole thing is overwhelming.

 

On tomorrow's agenda I am seeing the GP to get requisitions for strep/mycoplasm titers among other tests and to point out all the inaccuracies (they even got his hair color wrong) in the report from the psychiatrist.

 

Any advice from someone who has been through this? If you had told me a year ago that I would be doing all this I would have said you were nuts! How can a kid who was perfectly 'normal' this time last year have so many problems this year?

[MomWithOCDSon]

Well we got through the first day of school without any incidents. I gave the teacher the report from the private OT and had a chat with her after school. She seems great!

 

A couple hours after I got home she called and asked if I could come to an appt. after school on Thursday with the outgoing principal/the new principal/a teacher from the resource room/our teacher and one other person who I'm not sure of. HOLY COW! I'm not sure whether to be excited that things are happening or to be scared stiff that so many people are involved. My biggest fear is that they will say he has too many problems and needs to be at home (this happened to a friend of mine). My hubby is working so I will have to go face this panel by myself. Man this whole thing is overwhelming.

 

On tomorrow's agenda I am seeing the GP to get requisitions for strep/mycoplasm titers among other tests and to point out all the inaccuracies (they even got his hair color wrong) in the report from the psychiatrist.

 

Any advice from someone who has been through this? If you had told me a year ago that I would be doing all this I would have said you were nuts! How can a kid who was perfectly 'normal' this time last year have so many problems this year?

 

Satara --

 

Because the laws are certainly different, but probably similar, between the U.S. and Canada, I can tell you about our state-side experience, but you'll probably have to reach out and/or do some research so that you know what your DS's full legal entitlements are.

 

First, I would assume that this is an "informal" meeting at this point, since statuatory Plan meetings (called 504's and IEP's here) require a written notification to all involved and give a full roster of those scheduled to attend and what their titles/roles are. If, by chance, however, you walk into this meeting and it looks as though they are gearing up for some sort of formal, documented approach in terms of where to go with your son from here, I would think you'd be well within your rights to ask for an adjournment and rescheduling with a full disclosure by them as to what the formal meeting will entail, what is expected of you, what their obligations are, etc. Here in the States, there are web sites devoted to informing parents about their kids' rights in the education system, with the formal intervention plans available, etc. And the school personnel is also required to give you certain documentation along those lines, as well, so that you can read it and be fully informed. So don't feel as though you have to continue with a meeting for which you're not fully prepared, or be "bull-dozed" into agreeing to anything -- interventions, etc. -- on the spot.

 

Second, if your DH isn't available but you have a trusted friend or family member who can come along for moral support, bring them. You're entitled. They don't have to say anything or prepare anything, but they can be by your side to squeeze your hand or hand you a tissue if you find yourself feeling emotional for any reason. Plus, they may think of things that could be said or added to the discussion that you're just not mindful of in that moment because of the anxiety such a meeting is bound to cause. They can whisper those things to you, or jot them down on a notepad to bring them to your attention.

 

Third, prepare for battle but hope for and expect compassion, kindness and understanding. Frankly, after the horror stories I'd heard from some others in similar situations, I was "loaded for bear," as my DH says. But, in the end, it turned out to be a great experience. I found that most people in the room (all but one, as a matter of fact) had my DS's best interest in mind and really, truly wanted to help, rather than find reasons to say they couldn't or wouldn't help. All you really need is that ONE kind, understanding soul on the other side of the table; speak to him/her, solicit their assistance and advocacy with the others.

 

And finally, just know that if anything along the lines of "you should keep your son at home" crosses any lips, you're entitled to a lot more and a lot better than that, and if they won't provide it willingly, then you can adjourn the meeting for the time being, go home and "bone up," and come back ready to take control of the next meeting. Here, our children are all entitled to the highest level of education possible, which means that even a "special education" kid who has advanced academic skills cannot be retained in a special ed setting all day that fails to meet his academic skills; he has to be mainstreamed and challenged. And if a school cannot meet a special needs kids' needs, then the school district is compelled to both 1) help find a school that CAN meet those needs and 2) fund that alternative education. There's no "keep your kid at home" allowed!

 

Hang in there and good luck! Let us know how it turns out!

[Satara]

Thanks Nancy you really know your stuff! I am so thankful that the OT will be there to go over things because I felt lost trying to decide what to ask for. Most of the time I feel like I have to be the specialist in all aspects of this. It's hard to know what to ask for when he changes hour to hour.

[MomWithOCDSon]

Thanks Nancy you really know your stuff! I am so thankful that the OT will be there to go over things because I felt lost trying to decide what to ask for. Most of the time I feel like I have to be the specialist in all aspects of this. It's hard to know what to ask for when he changes hour to hour.

 

I'll be thinking of you! Glad you'll have someone there with you; that will, I'm sure, help you tremendously. Keep us posted!

[airial95]

I agree with Nancy on bringing a second person. We did this to all of our IEP meetings thus far and it helped. I'm usually the strong one - a force to be reckoned with (especially when it comes to my kids), but I got so worked up at our first IEP meeting (and emotional), that my husband was the one who ended up picking up the slack for me. At our second meeting, we brought a friend who has a PhD in special education (she's was also the director of our day care so she knew my son's issues first hand). She was AWESOME. We found at our first meeting that they use an entirely different language! I was so hot at the first one I actually had to point out to one of the women who kept talking in educational lingo and jargon that between my hubby and me there were 3 bachelors, 2 masters and a candidacy for a PhD and we couldn't understand a darn word she said!!! So having the impartial set of ears was crucial. They can also provide an alternative interpretation to what was discussed that isn't so emotional.

 

Some of our son's accomodations include a "thinking chair" in the classroom. It's a quiet corner he can go when things become overwhelming or he becomes worked up. It has worked for the rages as well (the few times he's had them since starting in this school.) Right now, he's in a special ed room, but he's still in pre-K. We want to keep him there until he starts K, and then we'll mainstream him. He's not developmentally delayed, it's all behavior, like many other folks here.

 

Another accomodation we have (if your pediatrician is willing) is a written order from our doctor to give him motrin in times of extreme stress. The school hasn't had to resort to it (since he's in the special ed room and they're equipt to deal with these things), but day care has a few times (and they're always amazed at the effect).

 

We also have things related to keeping him healthy - use of hand sanitizer, limited sharing of supplies (tough in the pre-K classroom), a personal water bottle to avoid the drinking fountain, things like that.

 

Good luck! Glad to hear that some of the pieces are finally coming together for you!

[Topaz1968]

Wow - it was like I was reading about my son. I was just about to post something very similar to this. My son has just started 5th grade. He also has a very hard time at school. Most of all, he has a hard time fitting in socially. I work a lot with the school social worker and that does seem to help a bit.

 

We had an amazing teacher last year, so it is hard for me to get used to a new teacher. And to top it off, his class has 25 kids in it. It is the largest class he has been in, and it is not good.

 

I am going to talk to the school and update his 504 plan that he has in place. That also may be something you might want to consider. You can get one with a medical diagnosis from the doctor.

 

Luckily, our new school nurse is familiar with Pandas, so I am also happy about that.

 

I want to make sure he gets a lot of breaks if needed. Just not sure what to do about his socialization skills. I will be posting a topic about that as well,

 

Good luck and if you ever need to chat - feel free to contact me directly.

 

Rachel