What kind of supports do you think the public school could offer?

[wendyroo]

My second son is 5.5; we are considering putting him in public school because his issues are ruining our lives.

 

We're all pretty sure he has ADHD.  He has been on the waiting list for an evaluation for 6 month, but he still had two more months to wait.  I am eager to try him on medications, but I honestly don't think they are going to make a tremendous difference.

 

It also seems likely he has ODD and/or RAD and/or PTSD, but the mental health facility was not ready to offer a firm diagnosis 9 months ago when he was evaluated.  They also said that there wasn't much they could do to help him at this age even if they knew what was wrong.

 

He spends all day crying, screaming, throwing tantrums, being violent and destructive, being disagreeable and annoying to everyone, fighting against the necessities of life (brushing teeth, getting buckled in the car, etc), soiling himself when he doesn't get his way and arguing, arguing, arguing.  Neither his body nor his mouth EVER stop moving.

 

It is getting to the point that I can't safely take him to the store, library, kids' gym or even speech therapy or the pediatrician's office.  Any little thing could set him off and suddenly I am dealing with a 50 lb feral animal who may lunge at someone, run away from me, throw himself down in the middle of the parking lot, etc.  If I am one-on-one with him, then I can still handle his meltdowns, but most often I have three other kids with me (two of them younger than him).

 

To complicate the issue, he has a severe, life-threatening allergy to wheat.  In the past we have not even considered public school, because his allergist strongly advised against it for safety reasons.  Now though, all of our mental and physical safety is being compromised by having him home, so...

 

If I were to walk in tomorrow and register him for school (kindergarten), what do you think they would do for/with him, and on what time scale?  The first time he threw an hour long tantrum or tried to kick through the classroom door or ripped a book to shreds, would they just be calling me to pick him up?  That would just make my life harder, not easier.

 

Any experiences or insights you could share would be greatly appreciated.  

 

Thanks,

Wendy

[nature girl]

I don't know that a traditional/integrated classroom would be able to offer him the support he needs, but have you looked into your district's behavioral programs? I don't have firsthand experience, but our district has a special classroom for kids with similar needs...I am sure their teacher to student ratio is much lower (and specially trained) and they have behavioral supports and social skills training, and ways to help kids and keep them safe when they do have meltdowns.

 

As far as the wheat...Schools are now used to caring for kids with severe allergies. They certainly wouldn't serve him wheat, but I think the only concern might be whether he's able to restrain himself. If he saw a child with cookies say (or if a child offered something to him), does he have the self control to keep himself from taking them?

 

This is just a sidenote, but if you haven't already, you might want to look into an elimination diet (GAPS, FOODMAP.) When I was first looking for non-med solutions for my daughter, I found websites with parents talking about the huge change they saw in their children when they eliminated amines, food additives, etc., many kids were very similar to your son, and went through profound changes. With the wheat allergy, it's very possible there are other allergies/intolerances you haven't discovered yet.

[MistyMountain]

If they trialed him in a regular classroom and he had destructive behavior that put others at risk in my district they have a behavioral program where the kid goes until they are stable and no longer need the program however long that is. Right now it is in a separate building but it will be moving to a school within a school model. It is a smaller class with teachers who have special training. The kids get social skills and behavior training that teaches them. The kids get academics at their level. I would put a request in for a IEP assessment so he can get a behavior plan worked out in whatever type of classroom he ends up in.

Edited January 26, 2017 by MistyMountain

[Crimson Wife]

I have heard excellent things about Parent-Child Interaction Therapy for helping traumatized children. Maybe there is a PCIT practitioner in your area who can work with you? :grouphug: :grouphug: :grouphug: :grouphug:

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug: 

 

I would call the school and feel them out on what programs they have available.  Some schools are set up to appropriately handle children who have severe impulse control/behavior issues.  Most, I suspect, are not but I don't know that for sure.  We don't have any in my area, for instance, but I have seen others post about very supportive programs.  

 

The teacher is just in a very hard position.  The teacher is having to manage a LOT of kids.  Way more than just 4-5.  Trying to keep all of them safe, and focused, and learning could be virtually impossible if one child was particularly violent.  Most teachers are not trained to deal with that scenario. They will probably call you to come get him.  I hope I am wrong, though.

 

On the flip side, they MIGHT have a program for kids with these issues.  And it MIGHT genuinely be well thought out and helpful.  Or it could be like with that story that made headlines where a child was locked up for hours, in a small room, no access to a toilet or water or human contact, for "bad" behavior. 

 

I agree, also call around and see what sorts of specialized programs are out there.  And perhaps pursue other avenues for evaluation.  And look into other diet issues.  Plus maybe relief programs where someone might be able to come to the house and work with him one on one a few times a week.  Gives you a break and hopefully helps him, too.

 

So sorry, Wendyroo.   :grouphug:

[Storygirl]

:grouphug: :grouphug: :grouphug:

 

I think you are wise to consider school as an option for him. If you have never had contact with the school, you can initiate it by contacting the special education or intervention department to see what they have to offer. Sometimes this department is called student or pupil services.

 

It would benefit the school -- and him -- to have a behavioral plan in place before he enters their doors, so I would talk to the intervention people first instead of just enrolling him out of the blue. Sometimes schools have a "we need to see for ourselves" policy, where they won't act on outside evaluations until they have done their own, but given how severe the issues are, I suspect they would perk up and listen to you and read any documentation you have.

 

You can ask if it would be better to start the IEP evaluation process now, as homeschoolers, so that a plan can be in place from day one, or if they would offer him an appropriate placement while the IEP process is in progress. You can request evaluations as a homeschooler.

 

I'm sure you will do this anyway, but be sure to describe his strengths, as well. I believe he may be 2e, correct? Advocating for him to get proper services and academics will still take a big chunk of your time, but I do think it's important for you to figure out a way for your family to have respite. In your case, I would count the hassle as worth it.

 

Because your situation is complex, I would highly suggest taking an advocate with you to the meetings with the school. These are people who have experience in working through the IEP process and can make sure that the school legally addresses all of the issues. The school must allow you to bring an advocate to the meetings if you want one. You'll need to do some research to find out how to find an advocate in your area.

 

:grouphug: :grouphug: :grouphug:

Edited January 26, 2017 by Storygirl

[wendyroo]

It would benefit the school -- and him -- to have a behavioral plan in place before he enters their doors, so I would talk to the intervention people first instead of just enrolling him out of the blue. Sometimes schools have a "we need to see for ourselves" policy, where they won't act on outside evaluations until they have done their own, but given how severe the issues are, I suspect they would perk up and listen to you and read any documentation you have.

 

The bolded is the part I worry about.  I am 99% sure that come March he will have an official ADHD diagnosis.  I also have a report from a psychiatrist that says DS shows "signs of" behavioral issues associated with ODD, RAD, PTSD.  If they give me a form, I could have it filled out by DS's speech therapist, gym coach and/or pediatrician, each documenting cases of him throwing massive, violent tantrums.

 

But other than that, I don't have any documentation.  At this point in time, he does not have any official behavioral diagnoses (though not from lack of trying on our part).

 

Wendy

[wendyroo]

I'm sure you will do this anyway, but be sure to describe his strengths, as well. I believe he may be 2e, correct? 

 

At this point, I honestly could not tell you if he is 2e.

 

5% of the time he can read and do math at a 2nd grade level (2 years accelerated).  95% of the time he refuses to do anything, and would rather throw a tantrum for an hour than tell you what letter his name starts with.

 

Wendy

[Lecka]

Long-term they can't call you to come get him. They have to get him services appropriate for him, if that is an aide or a special classroom.

 

I have had times when they call and let me know and I have the option of coming to get him or leaving him.

 

I come if I think he might be getting sick.

 

Once I didn't come bc it was something he was doing at home also and I would handle it the same way they would.

 

I dont know what would happen from the first day unless you tell them "please call." I don't know at what point they call for a child without that.

 

But longer term -- they get stuff in place. Can't just call you.

 

I hope he is a kid who thrives with routine. Sometimes kids who thrive with routine do very well at school (with supports etc).

 

Good luck! I hope it goes well!!!!!

 

Edit: I have found I can get called sometimes bc they want to know if I have some insight or suggestion. Also they want to know if I think they are handling things a good way. I would rather get called than find out something happened that I have a problem with.

Edited January 26, 2017 by Lecka

[wendyroo]

I hope he is a kid who thrives with routine. Sometimes kids who thrive with routine do very well at school (with supports etc).

 

Kind of the opposite.

 

Today's complete melt down was because his gym teacher told him it was time for the group to walk to the drinking fountain.  DS said he didn't want a drink, teacher said that was fine, but that he had to walk over there with the group; all hell broke loose.

 

DS has been taking the same gym class, with the same teacher, twice a week for 6 months.  Every single class, the group walks to the drinking fountain 20 minutes into class and 40 minutes into class.  The rule has always been that the group has to stay together.  The whole class setup is very consistent, very routine, but DS has been throwing more and more tantrums there as he gets more comfortable.

 

Our whole life is very routine oriented.  I am a Type A, INTJ kinda gal trying to cope with DS + his older brother with ASD, ADD, Anxiety + a preschooler + a baby.  We are very organized, with a predictable daily routine.

 

Really, the only kind of situation that DS thrives in, is one over which he has complete control.  He wants to call all the shots and never have anyone else tell him what to do.  He also REALLY doesn't like experiencing natural consequences for his actions.  Today in the gym, I told him I had to take him out to the car because he was hitting and screaming.  I asked if he wanted to get dressed (he was barefoot in shorts and a tshirt), he spat at me.  I tried to help him get his sweatshirt on, he kicked me.  So I hauled him out to the car through the snow and he got even more violent and started screaming that he wanted his clothes on...BUT HE STILL WOULD NOT PUT THEM ON OR LET ME HELP HIM!!!

 

Wendy

[Ottakee]

School might be a good option for a few reasons:

 

It would get YOU out of the middle of the educational piece and allow you to just be the mom, without having to worry about the school stuff>

It would give you a break as well as a break for your other kids.  This can be priceless.

It would give you some validity with doctors and specialists regarding his behavioral needs.  Often they want to see behaviors reported in more than 1 setting by various adults.

 

Does his birth family have a history of mental illness?  I had one that sounded very much like your son in many ways.  Child was diagnosed with pediatric bipolar and put on meds.  The difference was AMAZING.  Bonding happened.  Behaviors are almost nill.  Therapy was able to be effective after the meds.

 

I would also suggest you finding an adoption support group in your area with parents who are in the trenches and know the best psychiatrists, schools, therapists, etc. for your area.  This can be invaluable.  

[wendyroo]

School might be a good option for a few reasons:

 

It would get YOU out of the middle of the educational piece and allow you to just be the mom, without having to worry about the school stuff>

It would give you a break as well as a break for your other kids.  This can be priceless.

It would give you some validity with doctors and specialists regarding his behavioral needs.  Often they want to see behaviors reported in more than 1 setting by various adults.

 

Does his birth family have a history of mental illness?  I had one that sounded very much like your son in many ways.  Child was diagnosed with pediatric bipolar and put on meds.  The difference was AMAZING.  Bonding happened.  Behaviors are almost nill.  Therapy was able to be effective after the meds.

 

I would also suggest you finding an adoption support group in your area with parents who are in the trenches and know the best psychiatrists, schools, therapists, etc. for your area.  This can be invaluable.  

 

He wasn't adopted.  We are his birth family, and there is no history of mental illness of any type on either side of the family other than his older brother who has ASD, ADD and anxiety disorder.

 

When the psychiatrist suggested RAD, it was simply due to the behaviors DS was exhibiting.  They also hypothesized that it could stem from his early breastfeeding days.  His allergy to wheat showed up from day 1 as a severe reaction to my milk.  Nursing made him violently ill, gave him rashes and made it hard for him to breathe.  His first 3 months were very rough.  After I cut wheat out of my diet when he was 3 months, he transformed into a happy, easy going baby.  He was an incredibly easy kid until he turned 3; he was a very, very difficult preschooler, but still on the hairy edge of age-appropriate.  Now, however, he is headed toward 6, and his behavior has just gotten worse and worse as he gets older.

 

Wendy

Edited January 27, 2017 by wendyroo

[Lecka]

I still have hope of public school working out. I hope it will work out bc I think it would help you out a lot. And it really can be a nice break and feel like "oh, I am ready to see my little guy" that can be a good feeling.

 

Honestly once kids are in tantrum mode you can't reason with them, so anything at that point is a write off. Of course he won't be reasonable about his clothes at that point.

 

My son has an aide, and there is a balance of expecting him to be able to handle things, and of removing him prior to the meltdown if he seems not to be handling things.

 

In this scenario -- maybe an aide takes him for a break and it works. Maybe he refuses to cooperate with the aide about taking a break. But maybe he gets used to taking breaks and can request a break when he is getting upset.

 

It seems like a step back, but it I still a step up from having a meltdown (ime). And my son is doing more and more, even though he takes breaks also.

 

I hope it will go well.

 

It is a big change and I hope he can be in a good program.

 

The wheat allergy will be easier if he has an aide or is in a resource room program of some kind. My son is, and this is the part of school where they are on top of allergies and kids have more supervision even at recess.

 

Anyway I hope it will work out if you decide to take this step, but it is a big step to take too.

 

My kids are in public school, and my son went to special needs preschool when he was 4.

 

It is not always easy, but there are a lot of good things, too.

[MistyMountain]

What you are describing reminds me of Pathological Demand Avoidance. It is not very well known yet but it is related to autism. There usually is a passive early history followed by really avoiding any demand and wanting to be in control. They typically have good pretend play and on the surface social skills and a few other differences from autism.

 

https://en.m.wikipedia.org/wiki/Pathological_demand_avoidance

 

http://www.pdasociety.org.uk/what-is-PDA/autism-and-aspergers

Edited January 27, 2017 by MistyMountain

[Ottakee]

Sorry if I offended you when I assumed he was adopted. I am not sure I would.agree with the ROAD diagnosis...Not when 3m to 3y were so easy going and now behavior is worse.

 

It could just be ADHD or it could be more. Possibly as someone suggested something on the spectrum that isn't quite autism.

[wendyroo]

Sorry if I offended you when I assumed he was adopted. I am not sure I would.agree with the ROAD diagnosis...Not when 3m to 3y were so easy going and now behavior is worse.

 

It could just be ADHD or it could be more. Possibly as someone suggested something on the spectrum that isn't quite autism.

 

Oh, no.  Not offended at all.  In some ways that would make the whole thing a lot more understandable.

 

So far he does not have a RAD diagnosis.  That was just one of the ideas mentioned by the psych.  Mostly, we just left that evaluation with a wishy-washy idea that something wasn't right, but that there was still a chance he would outgrow it.  He was 4.75 at the time, and we all hoped he was just a late bloomer struggling to get through the difficult, stubborn preschool years.  

 

He is almost 5.75 now, and the issues have just gotten more intense over the last year.  Unfortunately, the mental health center wants to do an ADHD eval (and get him on meds and figure out the proper dose) before proceeding with further evaluations.  The wait for the ADHD eval was 8 months, and I'm sure it will be at least summer before his med dosage is properly ramped up.  Then they will decide what type of evaluation he needs and we can get that scheduled...with a 6-12 month waiting list.  

 

Optimistically, we might be able to get in for further evaluations in the fall or winter.

 

Wendy

[mamamoose]

Why is there such a wait for a diagnosis? This seems emergent, at least to some degree. I would be driving (and do drive a very long way for any kind of health/mental health treatment) to find answers and get him on meds (if that's the route you plan to go). I don't know what RAD is, but my son is ADHD with ODD tendencies at times, and its very very frustrating but I know from experience that frustration only makes the situation worse. Our school would not have the capabilities to deal with that kind of behavior, and couldn't even really accommodate my son in his issues, so we are at home, but he doesn't seem to be as defiant and his tantrums aren't as violent as yours but I can relate to some degree. We do notice significant improvement on a diet free from colors and additives...that would be difficult in school, thought with all the temptations.

[wendyroo]

Why is there such a wait for a diagnosis? This seems emergent, at least to some degree. I would be driving (and do drive a very long way for any kind of health/mental health treatment) to find answers and get him on meds (if that's the route you plan to go). I don't know what RAD is, but my son is ADHD with ODD tendencies at times, and its very very frustrating but I know from experience that frustration only makes the situation worse. Our school would not have the capabilities to deal with that kind of behavior, and couldn't even really accommodate my son in his issues, so we are at home, but he doesn't seem to be as defiant and his tantrums aren't as violent as yours but I can relate to some degree. We do notice significant improvement on a diet free from colors and additives...that would be difficult in school, thought with all the temptations.

 

Well, I don't know that I would call it emergent.  We have been struggling with this issue for 2.5 years.

 

Unfortunately, around here (and I mean here is a broad sense) the wait for mental health care is often very long.  My older son was crippled by anxiety, but it still took 9 months on a waiting list to get him an evaluation and 4 more months before he could see his assigned psychiatrist in order to have meds prescribed.

 

Wendy

[wendyroo]

So, DH and I had a long discussion last night and we have come up with a tentative plan.

 

We are both very wary of sending DS to public kindergarten.  His allergist has emphasized that she thinks that is a Very Bad Plan.  It is just too hard to avoid exposure to wheat; play doh has wheat, many kids' paints have wheat, fish food has wheat, birthday cupcakes have wheat, sandwiches and goldfish crackers and granola bars have wheat.  DS has never reacted to inhaled wheat dust, but he has reacted to contact with wheat on surfaces.  It would be very difficult and scary to put him in a public school classroom.

 

For now we are going with a four point approach:

1.  Immediately pull DS out of gym classes and speech therapy (even though his articulation still tests around the 5th percentile).  DH is going to work from home a few hours a week so that I can take the other children to their activities.  DS will simply not go any further than the fenced back yard unless there is one adult who can focus their entire attention on him.

 

2.  Start a food/behavior log for DS.  We did this for a couple months last year, but we were also dealing with a newborn at the time, so the log was not as thorough as it could have been.  We already eat a very clean diet, but there is always room for improvement.  We will also research supplements which might be beneficial for DS.

 

3.  Work toward getting his ADHD diagnosed and medicated as quickly as possible.  He will be evaluated in March, and I have already spoken to his pediatrician about her starting him on meds while we wait for the mental health center to get DS in to see his assigned psychiatrist (will probably take 2-6 months).  We are eager to see what effect managing the ADHD might have on his overall behavior.  We do not expect it to be a silver bullet, but we do hope that alleviating some of that struggle will make his other issues just a little bit more manageable.

 

4. Contact the school district and see what programs/facilities they have available for these types of cases.  Visit these programs and see what procedures they have in place to handle severe allergies and to offer children appropriate academics.  Find out from the school whether DS would have to "fail" out of a regular classroom before being offered supports.  (This is what happened with my older son.  Despite recommendations from a psychiatrist and a behavioral pediatrician, the school would not discuss supports for him until he had show he was unable to function in their regular preschool program.)

 

Thank you for all the suggestions.

Wendy

[Lecka]

That sounds like a good plan!

 

I got in after 4 months on an 8-month waiting list by taking a short-notice cancellation.

 

If you call every two weeks or month and say you are interested in any short-notice cancellations, maybe you can get in sooner. It is worth a shot.

[Storygirl]

The drawback to pulling him out of speech and gym is that the doctors will want to have an adult outside the family fill out evaluation forms. Not having someone to ask can be an issue. If you think he should not continue in those programs, perhaps you can ask the SLP and gym teacher if you can still have them fill out the forms when you get them.

 

Personally, I'd be tempted to leave him in those programs until the appointment time, because even though it is a bad experience taking him there, having that documented can be really helpful for the evaluation process. But I realize it is taking a toll on your family, and you need to take that into consideration.

[wendyroo]

That sounds like a good plan!

 

I got in after 4 months on an 8-month waiting list by taking a short-notice cancellation.

 

If you call every two weeks or month and say you are interested in any short-notice cancellations, maybe you can get in sooner. It is worth a shot.

 

I call about once a month; we are willing to drop everything to come at a moment's notice.  Unfortunately, the waiting list for cancellations is so long that it is unlikely we will make it to the top of that list before our scheduled appointment.  We are really in a mental health desert around here.

 

We have considered moving to find better services, but that would mean moving away from DH's job (job security, flexible work hours, good benefits, retirement plan, etc) and moving away from my parents (our only source of respite).

 

Wendy

[wendyroo]

The drawback to pulling him out of speech and gym is that the doctors will want to have an adult outside the family fill out evaluation forms. Not having someone to ask can be an issue. If you think he should not continue in those programs, perhaps you can ask the SLP and gym teacher if you can still have them fill out the forms when you get them.

 

Personally, I'd be tempted to leave him in those programs until the appointment time, because even though it is a bad experience taking him there, having that documented can be really helpful for the evaluation process. But I realize it is taking a toll on your family, and you need to take that into consideration.

 

I have considered that, but at this point I don't think we can safely continue to take him.  Fortunately, my boys all participate in the same homeschool gym class with the same teacher.  The other boys will be continuing the class, so I am confident the teacher will be willing to fill out the form when I get it from the doctor.  His behavior has certainly made a big enough impression on her that she will have a lot to say.

 

It is a good idea to mention the form to her now.  I will also call the mental health center and see if they will send the form now rather than waiting until next month (they normally send them a month before the appointment).

 

Thanks,

Wendy

[maize]

Depending on how his issues manifest in a school setting he could be in a regular classroom with a full time aide or in a separate special needs/behavioral classroom. I would set up an appointment at your local school to discuss possibilities with the principal and school psychologist.

[kbutton]

Have you had either of your kiddos evaluated by your county board of developmental disabilities? You would need to ask careful questions, particularly if you are mentioning their IQs, but there are 2e kids that qualify for services. The formula here has a lot to do with functionality, and functionality is clearly impaired in your home. As a parent, you can comment on black and white questions (at least here you can). So, if one question has to do with getting dressed "independently," you can describe what getting dressed is like--how many prompts, what kind of help is required, whether it happens in the end, if you get spit on, the whole deal.

 

I can't guarantee it will be a magic bullet, and I can't guarantee a lot of services would be funded. Here, each county has a waiting list for the waiver program that our state uses to dispense funds. Once you are on the waiver list, you are eligible for some immediate help (you will have to ask what services), and then when you move up the waiver list for whatever level you qualify at, then you get monies to be used for a whole host of services. At any point where the child qualifies as disabled in the sense that they can serve, then you can ask for a care coordinater/case manager to help you out. You have to ASK for a lot of these things, but it's there. 

 

Labels help, but it's about functioning according to their test parameters.

 

Just another option in case it helps now and/or down the road. Some waiver programs have huge waiting lists, and others are shorter--it's good to get on them early before things just continue to compound. 

 

I would think both of your boys would qualify under our local guidelines.

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:

[maize]

Have you had either of your kiddos evaluated by your county board of developmental disabilities? You would need to ask careful questions, particularly if you are mentioning their IQs, but there are 2e kids that qualify for services. The formula here has a lot to do with functionality, and functionality is clearly impaired in your home. As a parent, you can comment on black and white questions (at least here you can). So, if one question has to do with getting dressed "independently," you can describe what getting dressed is like--how many prompts, what kind of help is required, whether it happens in the end, if you get spit on, the whole deal.

 

I can't guarantee it will be a magic bullet, and I can't guarantee a lot of services would be funded. Here, each county has a waiting list for the waiver program that our state uses to dispense funds. Once you are on the waiver list, you are eligible for some immediate help (you will have to ask what services), and then when you move up the waiver list for whatever level you qualify at, then you get monies to be used for a whole host of services. At any point where the child qualifies as disabled in the sense that they can serve, then you can ask for a care coordinater/case manager to help you out. You have to ASK for a lot of these things, but it's there.

 

Labels help, but it's about functioning according to their test parameters.

 

Just another option in case it helps now and/or down the road. Some waiver programs have huge waiting lists, and others are shorter--it's good to get on them early before things just continue to compound.

 

I would think both of your boys would qualify under our local guidelines.

Do all counties have such a board?

[Lecka]

Mine does not.

[amo_mea_filiis.]

Are you in a state that has cyber public schools?

 

We're using a cyber right now, and for my son, it gives me the IEP I need to email to lots of districts and see what they offer.

[wendyroo]

My county does not offer any disability services.

 

Wendy

[OneStepAtATime]

My county doesn't either.

[maize]

I searched and couldn't find anything like that in mine either.

 

Access to support and services varies so widely across the country. It also tends to be true that states with a higher cost of living and higher taxes often have more services available.

Edited January 28, 2017 by maize

[maize]

I seem to recall at least one person on this board saying that their online school provided an in-home aid, if public cyber/independent study charter schools exist in your area that would be worth looking in to.

[maize]

I so wish I had more ideas to offer you Wendy, I'm exhausted dealing with my own kids' special needs and yours sound so much more severe.

 

I am doing the "send one child to school while homeschooling the rest" thing this year and it is going pretty smoothly.

[Schadenfreude]

In my area schools, an IEP does not excuse the behaviors the op mentioned. They will not pay for a person to follow around a single child. Our schools would call the parent every single time and if the parent does not show up within 20 minutes they call the police. I have a friend who is a teacher in this district and has a child like the op's. By the time she was able to leave her school and get to him he was lying on the floor handcuffed by the police. This is a very well funded district in a well off area. It is legal because the law states you are entitled to access to a free education and the state offers 3 online public schools and will pay for internet and give you a computer. You are not entitled to free daycare (parents have already tried to sue and that was the ruling).

:grouphug: Wendy I hope your district is better and you are able to find good help.

Edited January 28, 2017 by Schadenfreude

[kbutton]

I think our state handles disability services by county. Each state determines how to handle things, but every state has funding. I believe the waiver program is through Social Security, but it's not the same as "I used to work, and now I have a disability" (at least in our state). I am a little fuzzy on what it looks like in other places, but there are other places that it looks a lot like our state.

[maize]

I think our state handles disability services by county. Each state determines how to handle things, but every state has funding. I believe the waiver program is through Social Security, but it's not the same as "I used to work, and now I have a disability" (at least in our state). I am a little fuzzy on what it looks like in other places, but there are other places that it looks a lot like our state.

I looked up services for developmental disabilities for my state but only found a program for adults.

[Lecka]

My state declines a chunk of that funding. Bc they don't want to follow the federal regulations -- thinks they are onerous and cost the state too much.

[geodob]

Wendy, his behaviour problems could be related to his serious problem with allergies.

Which you noted have occurred since birth.

A key factor in allergies, is the production of Cortisol in response to allergens.

Another factor, is that Cortisol is involved in the 'fight or flight reflex'.

 

Though with a serious ongoing allergy problem, this will cause the Cortisol levels to remain high.

But when this continues for some years?

The Adrenal Glands that produce Cortisol, can become exhausted.

 

With the result, that Cortisol levels can become 'very low'.

While Cortisol is produced as part of 'flight or fight reflex'.

Importantly it has been identified, that Cortisol also plays a role in 'inhibiting our fight or flight reflex'.

So that we don't react in fear of something, that always scared us.

 

Their has been various research into children with chronically high and low basal cortisol levels.

Which contradicted what was expected?

With high levels, it was associated with depression and a lack of response.

But with low levels, it was associated with 'aggressive behaviour' and 'conduct disorder'.

 

Where in fact, the low basal Cortisol level', left the children without the ability to 'inhibit' these responses and behaviours.

So that they constantly react to situations, with a 'flight or fight reflex'.

Which fits with the behaviours that you described, and could provide an answer.

 

Though 'basal cortisol levels', can be tested for, using 'saliva tests'.

That just involve 'spitting into a few test tubes, over a few days'.

 

As you already have an Allergist.  Perhaps you could get them to test whether your son has 'low basal cortisol levels'?

Edited January 29, 2017 by geodob

[geodob]

Also here's some links to related articles:

 

https://adrenalfatiguesolution.com/immune-system/

 

http://www.uchospitals.edu/news/2000/20000113-cortisol.html

 

http://www.concordia.ca/cunews/main/releases/2011/02/09/behavioral-problems-linked-to-cortisol-levels.html

 

 

 

 

[wendyroo]

Bumping this old thread to share the results of Elliot's psych evaluation.

 

So the psychiatrist diagnosed ADHD, which was no surprise whatsoever.  He also diagnosed ODD, which we had suspected as well.  

 

Out of left field, however, he also said that Elliot is teetering on the edge of an autism diagnosis.  He said that the results of the Child Behavior Checklist that DH filled out for Elliot put him in the autistic category, while the one I filled out put him just on the other side of the line.  He said that Elliot is an interesting case, because his rigidity of thinking and some other select behaviors point strongly to autism, but OTOH, many of his behaviors are not characteristic of autism at all, and he is very socially adept/manipulative.

 

I think we can also clearly consider Elliot 2e now, because they administered an IQ test, and he scored 128.  I take that number with a grain of salt, however, because they said he was incredibly distracted and uninterested during the test.

 

We are still waiting for the official psych report, but the recommendations seem to be medication for the ADHD, possible ABA for the ODD (though the psych acknowledged that those services are VERY hard to access and afford here), DH and I attending a Nurtured Heart training seminar, and perhaps bringing Elliot back to run an ADOS down the road a bit if we want a more definitive answer about autism.

 

Wendy

 

 

[PeterPan]

When you've got that kind of discrepancy between parents and a family history of previous diagnosis, might be better to assume it is ASD and that the one parent isn't quite seeing it yet.

 

You can be socially manipulative and have ASD. Ds is. It's the IQ.

 

Might be interested to distinguish distracted and non-compliant due to social thinking deficits. The first (idiot) psych we used said ds was ADHD-inattentive, which is now totally, totally laughable to anyone who works with him. Once we got the social thinking interventions in place and got him complying, what sorta looked like he was distracted faded. He (my ds) also needs serious sensory supports and breaks. But it's not really inattention. He can focus for an hour, no problemo. It's just that his body has to MOVE at some point.

 

So yes you would pursue the autism evals, but you might want to step up the NH and get social thinking training.

[Guest]

1. Socially adept

Some bright kids with several siblings may learn to adapt to social rules without necessarily understanding them. Not saying it's the case here, just saying that 2E kids can be trickier to figure out.

2. Manipulative

Whenever I see this as a point of ruling out autism, I think, someone needs to read John Elder Robison's books LOL.

 

However, he is young! With age, it may become clearer if he is on the spectrum or not.

[Guest]

If you read books from adults on the spectrum, you will see that some had less difficulties socially at a younger age, when the rules were more straightforward, than they did as they got a bit older and things became more complicated. It's one of the reasons why you have so many people now being diagnosed as adults.

[maize]

I have one teetering on the edge of an ASD diagnosis. The iffy bit there too is how I fill out the questionnaires--it seems like if I am looking at/thinking of things a certain way I could fill in the answers that would push him over the edge--but I can see the same things slightly differently and then my responses don't quite match an ASD profile.

 

For now I am comfortable thinking of him as verging on ASD and bearing that in mind as I work to address his other diagnosed issues. He doesn't have the severity of behavioral issues that you have described with Elliot though so the urgency of diagnosis/therapy intervention may not be the same.

Edited March 21, 2017 by maize

[Mom28GreatKids]

Wendy, my son is very much a similar kiddo. . . he is severe adhd, severe anxiety, kissing the spectrum. He didn't wind up with an ASD dx. Dr. Treated the severe adhd first. . . to slow him down. Then we worked behavior (still are) and he went through the PLAY Project which is for ASD kiddos. Guess what, he is in public preschool and THRIVING. I brought in his behaviorist who wrote an in depth behavior intervention plan because we both KNEW he needed one. Guess what. . . it has NEVER been used. Not once. It was the severe ADHD/ anxiety that caused every bit of his behavior. Every bit. And now that meds are in place, he has quickly learned to behave appropriately. QUICKLY. So even though we have spots. . . old patterns. . . he is a different kid. He is social and has friends and presents as a nt kiddo with atypical speech (apraxia). Had we not medicated, I think he would have gotten the asd dx eventually. He still could, bit I doubt it. I would just take things one thing at a time. Try some stuff, see what works. Our public preschool is out of this world. Speech is working. But these would not have been successful had we not medicated first. I hope you get some things in place. Sounds like you are all dying. We were too.

[kbutton]

Thank you for the update. I think I would try meds and anything you can find for support that actually helps you (there are bad service providers too).

 

It's not always obvious from the get-go about autism when you have a 2e kid. They can be more socially astute than you think, and manipulation can be as simple as they figured out x behavior worked from careful observation of cause and effect. (That's intended to be a neutral statement, not a parenting statement--behavior=communication, behavior=mimicking what other people do when it goes well for them.) If my son struggled to figure out something socially, people might seem random to him, but he could watch cause and effect often enough to know that someone else might get in trouble, he might get in trouble, someone might yell at him, so he knew that he should do something different. Sometimes the alternative behavior was a good guess, sometimes it made things worse, and sometimes it didn't help at all, but he would keep track of the success/fail ratio over time. That undoubtedly contributed to his exhaustion and meltdowns after any kind of social activity prior to diagnosis (and he still gets more tired out in those situations).

 

A lot of 2e kids have alternate "skills" to rely on at that age.

[nature girl]

I'm glad you're starting to get some answers. I think starting meds will be a good first step, you can see how far they can take you. From the little you've said, I'd suspect there's something else going on, on top of the ADHD and ODD, his outbursts seem more severe and constant, but hopefully the meds will make a dent.

 

Have you had a chance to make up a food log and/or try an elimination diet? It might be worth eliminating all potential allergens just for 3-4 days, to see if that makes a difference. Or you could try cutting out one common allergy at a time (I'd start with dairy, since it's common for people with gluten intolerances/allergies to also have problems with dairy.) This is an interesting study from a few years ago, which showed a strong correlation. (I've also seen testimonials from parents with issues as or more severe than your son's, who improved significantly after an elimination diet.)

Edited March 22, 2017 by nature girl

[VickiW]

It sounds like you have a lot on you and this kid really needs help. You need help too! If you are truly in the mental healthcare black hole you described, there is a good chance the public school system might not be prepared to offer the assistance your child needs either. This is what I'm discovering in my small town in conservative land as I'm just now going through similar testing for my son. Fortunately, I can travel about to a major hospital system to receive excellent care for my kid. But the doctor's recommendations for schooling was not in favor of public school simply because they don't always recognize issues like what we are facing. So they certainly are not well equipped to deal with them.

 

I think that once you get through the testing phase of this with your kid and begin to pinpoint what's going on, the doctors will begin pointing you in the right direction. I hope you find resources close to home.

[ElizabethB]

It sounds like a possibility of another food allergy causing some of the problems.

 

I would do an elimination diet for 7 days.  You feel worse before you feel better.  Eat each day foods you have never eaten before or eat rarely, on a rotating basis. No spices except salt, no toothpaste (many are allergic to mint or other additives in it.)  Just brush for 3 minutes with nothing, peace corps swears by it!  Only water to drink, or on rice day, rice milk.

 

For example, day 1:

 

Only things on list:

buffalo, olive oil, sweet potato, star fruit

 

D2:

quail, quinoa, sunflower oil, banana 

 

D3:

venison, coconut oil, spaghetti squash, melon

 

D4: 

duck, rice, fruit you eat rarely, not a berry

 

repeat days.  

 

You can get weird meats and starches and veggies in some states at Whole Foods or ethnic stores, some states you have to order meat online, I've ordered from:

 

http://www.dartagnan.com

 

Other weird meat choices that are commonly available are rabbit, lamb and goat, palm oil is a commonly not used oil.

 

I also have felt a lot better from using a water filter that also filters out fluoride and all VOCs, I use the big berkey with both the regular filter and the fluoride filter.  

 

Google elimination diet for more ideas for things that are low risk of being allergenic.  If you are anywhere near LaCrosse Allergy clinic in LaCrosse, Wisconsin, I highly recommend them and their food allergy drops, they have helped me a lot.  They could build up his wheat tolerance so that it is not as life threatening and make school safer.  They work well with out of state patients, too, I go once a year and have my drops adjusted with over the phone consults.  They were also very helpful in pinpointing some foods that I was allergic to that I didn't realize, they do double blind testing with food drops and monitor your heart rate.

 

 

Edited March 25, 2017 by ElizabethB