When its good, its good....when its not...

[jennd23]

So I haven't had to come around much lately, which is a blessing, but things are starting to go downhill.

I don't know where to start, so I'll just babble about it. On Saturday he had a friend over (for the first time ever). I could tell he was done playing so we walked to the park and I called friend's mom. In the few minutes it took for her to get there, my son had a major meltdown, screaming, crying, etc. Friend came over and asked if he was ok and my son replied with squinted eyes and a raised fist that he better leave him alone or else. Uh.....what? So the friend says "he does that at school all the time" that of course makes my son more angry and yells about the friend lying, he's hysterical at this point but we have to wait for the friend's mom to get there. We get home, he cries the whole walk home (its less than 5 min) and by the time we get home, he's fine. Completely over the meltdown.

Well, fine, then last night I don't even remember what we were doing, what I said, etc. Last I remember we were joking around. Next thing I know, the fist comes up, the eyes squint up and then he kicks me in the legs. I left the room, then came back turned the tv off and got a bath ready for him. He took a bath, then was told to go to bed (its about 7:00 at this point, bedtime is 8). I told him he could read if he wanted but that he really hurt my feelings and my leg and he needed some time in his room to think about how his actions hurt me. He came out about 7:30 crying about it saying he's so sorry, etc. I think he was really just sorry that he got into trouble, but ok, I gave him a hug and said thank you, now go on back to bed, just because you say you are sorry doesn't mean your punishment is over.

So this morning.....lord help us. he comes in my room at 5:30, I'm up and exercising and tell him he has to go back to bed. He whines and says he's hungry so I say he can go make his breakfast, etc. He eats then I let him lay on the couch and watch TV while I get ready. So, the rest of the morning goes by he's very mouthy but he woke up at 5:30....somewhat expected. So I remind him that being sassy and talking back will make him lose his TV time. I'm walking to the garage at this point to get stuff in the car and ready to go, and he runs up behind me, blocks me in the garage and yells I"M GOING TO KILL YOU!!!!

At this point I don't know what to say so I say "get in the car, now" (its time for school). On the way I tell him that it is never ok to tell someone that and it is never ok to raise his fists at someone and that when he's older he will go to jail for those things. Of course, this upsets him because "you are going to put me in jail" I tell him that I am not putting him anywhere but if he uses his words and fists like that, he will put himself in jail. So great start to our morning.

I need advice, I don't even know what kind. I need something though. I don't know what to do with him, I don't know how to react to these things, I think he needs more counseling than he's getting at school probably, but all the play therapists we've seen are a joke, not that I think I don't need help dealing with-him too but that's what almost all of them want to talk about. That is NOT the issue. This child needs help, yes I need to learn to deal with him but he has to learn how to deal with himself!! Ugh!! Could this be a medication imbalance? I think my sig is up to date but i'll look at it after I post. I'm just so disappointed, things have been going well for months now until just about this past week.

 

[buddy]

Wow, I can really relate to this. The first times I heard such words. And only this past week, while on the way home after a school party, I had to pull over, and luckily we were right by the police station. I just went in the parking lot but I stood outside of my car to get him to stop the threats and calm down. He was panicked. I said, well if the police walk out and hear you, they are not going to care what I say about your medication, seizures or autism. They are just going to be worried about you hurting mommy. He calmed, we went home...etc. (next day he had a big seizure, so bad mommy but I did what I had to do to get us home safe). Now he is still stuck on the fact that I WANT him in jail I WANT the police to come and take him away and I threaten to call 911 ALL of the time. (I did call twice when he was in crisis/medication. emergency, police always come with ambulance here). He will even be more specific... "I feel like to get a knife and kill you" I have heard normal little kids say things like this, and you laugh knowing they have no resources to do so but you hear "I am so mad and frustrated now". I still hear my son that way since he is so developmentally delayed and has no access to weapons, not even kitchen knives or anything like that, not tools, not child scissors, haha. Not just for danger, but he doesn't have good enough impulse control and he can give himself hair cuts, cut up things that should not be cut up but seem fun to do it, smile. But as he gets older and people dont understand his level of development, I have to explain to him how others hear what he is saying. And of course to be extra careful, I always have to consider that at some point he could get so upset that he really would grab something to try to hurt me. I have never seen that in a planned way, but he has impulsively kicked etc. like what you saw.

Not very helpful to just share that I understand but wanted you to know you are not alone. I know lots of parents who have the same struggles with their kids on the spectrum. If he has grown (3 lbs has made a difference for my son growing up) he could need medication adjustment. of course they could be adding to his explosiveness...many of us have found that out and it is tricky to test the theory because you have to go off which has problems of its own.

Can you update your neuropsychologist evaluation or get a second opinion about the medications (just a consult if you like your provider--for a second opinion, which they should welcome, or if you dont care for your provider change docs...)

Poor kid, he must be very upset to be doing these things. He is so lucky to have you working on his side.

 

[Bunny]

I can relate, as well, and I have said the same thing many times. When he's good, he's great, but when he's bad - watch out because it can get REALLY bad.


You say that you have had play therapists in the past. Can you get him a regular therapist? Someone who can sit down with him and try to peel back the layers to find out what is underneath it all? That can take a while, but if you can find someone that you trust and that difficult child trusts, it can do alot of good. If you don't know where to find one you can try calling your pediatrician and see if they have any recommendations.

I'm sorry it was a bad time for you. I know how it feels.

 

[jennd23]

Well, because of his communication issues (no actual speech issues, just issues communicating) his psychiatrist suggested play therapy.

 

[InsaneCdn]

What kind of help is he getting for his communication issues? Because... not being able to communicate well builds frustration into their lives SO FAST. It can be the source of behavior issues just because of the frustration.

 

[jennd23]

He gets couseling at school, they work with him on that as well as other self-esteem issues. I have to go up there to bring him his spare glasses, I will probably stop in and talk to the counselor while I'm there too.

 

[soapbox]

Hmmm...

No problems with language, but problems with communicating.
I wonder if there's any chance he could have Central Auditory Processing Disorder (CAPD) on top of the other dxes?
I'm thinking classical Central Auditory Processing Disorder... where the person has difficulty deciphering verbal language. Later, it shows as a major gap between verbal and written skills, with written being much stronger.

Or it could be an Auditory Processing Disorders (APD) sometimes referred to as "auditory figure ground"... able to handle language, but can't pick it out in the presence of background noise. And classrooms - no matter what they tell you - are very noisy!

This would be a Speech Language Pathologist (SLP) evaluation, at least initially.

 

[buddy]

Well, because of his communication issues (no actual speech issues, just issues communicating)

does he see a speech/language therapist? The areas seen by a speech language therapist in schools include:
speech/articulation, language (syntax/grammar, understanding language, putting together/formulating language, processing sounds and words/language, vocabulary etc. and the last area that is assessed and worked on is called Pragmatic Language. That is social use of language. Having Asperger's means there is a presumption of social communication issues and a speech lang. pathologist would be needed as a related service provider in order to help support your son in the general education environment. If this is an area of need it should be in the IEP. Do you feel that would benefit your son (often times there are social communication groups etc.) Maybe you already do/have done this so just throwing it out there.

Play therapy and talk therapy dont work well for my son either. He is getting better at the talking thing but not in a way that you could expect him to sit and do it in a scheduled session. It comes out in bits and pieces as he goes about his day.

Makes things much trickier when you want to help them with thoughts and feelings, huh?

 

[jennd23]

Oh yes, he's worked with a speech therapist, not within the school district. They (the school district) do an average of his results to determine if he qualifies. He did very poorly on the pragmatics/functional part but very well on the others, so based on the average, he does not qualify. We just found all of this out somewhat recently, but I need to get him back into it outside of school. He's done groups and one on one with a speech therapist. Honestly, I didn't see a ton of improvement in the year-ish that he went, but I know its a long haul. We have only known of his diagnosis for about 1.5 years, before that I assumed that everything was just "typical X yr old behavior".

 

[jennd23]

And I'm sure you're thinking why would anyone stop speech therapy, etc, but unfortnately my insurance doesn't cover it and with the changes that were made to our coverage it was going to be way too expensive to continue outside of school. That obviously won't change, but I know he needs to be back in....somehow. I was really really hopeful that the school would work it out.

 

[JJJ]

Jenn,

Is he still 7? When Eeyore was about that age, I started explaining to Eeyore about how his behavior would lead to jail if he was older. It is one of the few things I wish I could go back and undo. Eeyore remembers me saying that and since he wasn't able to control his behaviors back then, he internalized it to mean that he would go to jail one day and now we have to undo the damage that did.

If you can get limited-language social stories, they may help DS with how to use his limited language to solve or prevent problems.

 

[buddy]

They (the school district) do an average of his results to determine if he qualifies. He did very poorly on the pragmatics/functional part but very well on the others, so based on the average, he does not qualify.

That is pure laziness.... What I do when I have a kid like that is give tests that ONLY test pragmatic language. Then you get them in. In any event, for a related service (not qualifying under S/L as a separate category) he would be eligible under his Autism Spectrum Disorders (ASD) disability area. The difference is in many areas that each goal/objective needs to be related to an IEP goal...or academic area of need.... so for instance if he his having trouble following rules of games in gym, you would address the pragmatic communication issues that need to be addressed under the following directions goal which may be in social/emotional area of the IEP. does that make sense? I am sure it is worked out technically a little differently in different places, but that is how Occupational Therapist (OT), SL and PT do it here. in my humble opinion, They are snowing you....smile


[h=2]What are related services?[/h]In general, IDEA 2004 defines the term related services as "transportation and such developmental, corrective, and other supportive services as are required to assist a child with a disability to benefit from special education...". The following are included within the definition of related services:

• speech-language pathology and audiology services;
• psychological services;
• physical and occupational therapy;
• recreation, including therapeutic recreation;
• early identification and assessment of disabilities in children;
• counseling services, including rehabilitation counseling;
• orientation and mobility services;
• medical services for diagnostic or evaluation purposes;
• school health services;
• social work services in schools;
• transportation.

[h=2]Who is eligible for related services?[/h]A student must need special education to be considered eligible for related services (unless the related service needed by the child is considered special education rather than a related service under State standards). A child must have a full and individual evaluation to determine:

• if he or she has a disability as defined under IDEA, and
• if, because of that disability, he or she needs special education and related services.

For the purposes of this publication on related services, however, it is useful to know that the law requires that a child be assessed in all areas related to his or her suspected disability. This includes, if appropriate, evaluating the child's:

• health,
• vision,
• hearing,
• social and emotional status,
• general intelligence,
• academic performance,
• communicative status, and
• motor abilities.

A variety of assessment tools and strategies must be used to gather relevant functional and developmental information about the child. The evaluation must be sufficiently comprehensive so as to identify all of the child's special education and related services needs, whether or not those needs are commonly linked to the disability category in which he or she has been classified.
If the evaluation shows that the child does, indeed, have a disability and that, because of that disability, he or she needs special education and related services, then he or she meets the criteria for special education and related services.
[h=2]How do people know what related services a child needs?[/h]The evaluation process is intended to provide decision makers with the information they need to determine: (a) if the student has a disability and needs special education and related services, and, if so, (b) an appropriate educational program for the student. It also allows them to identify the related services a student will need.
Following the child's evaluation and the determination that he or she is eligible for special education and related services, a team of individuals called the IEP team---which includes the parents and, where appropriate, the student---sits down and writes an Individualized Education Program (IEP) for the student. The IEP team looks carefully at the evaluation results, which show the child's areas of strength and need. The team decides what measurable annual goals (including benchmarks or short-term objectives), among other things, are appropriate for the child. Part of developing the IEP also includes specifying "the special education and related services and supplementary aids and services to be provided to the child, or on behalf of the child, and a statement of the program modifications or supports for school personnel that will be provided" for the child:

• to advance appropriately toward attaining the annual goals,
• to be involved and progress in the general curriculum (that is, the curriculum used by nondisabled students),
• to participate in extracurricular and other nonacademic activities, and
• to be educated and participate with other children with disabilities and nondisabled children. [Section 300.347(a)(3)]

Thus, based on the evaluation results, the IEP team discusses, decides upon, and specifies the related services that a child needs in order to benefit from special education. Making decisions about how often a related service will be provided, and where and by whom is also a function of the IEP team.
It is important to recognize that each child with a disability may not require all of the available types of related services.
If a child with a disability has an identified need for related services, the public agency responsible for the child's education should ensure that a qualified provider of that service either:

• attends the IEP meeting, or
• provides a written recommendation concerning the nature, frequency, and amount of service to be provided to the child.

Once the IEP team has determined which related services are required to assist the student to benefit from his or her special education, these must be listed in the IEP. The IEP also must include a statement of measurable annual goals (including benchmarks or short-term objectives) related to:

• meeting the child's needs that result from his or her disability to enable the child to be involved in and progress in the general curriculum (or for preschool children, as appropriate, to participate in appropriate activities), and
• meeting each of the child's other educational needs that result from the disability.

In addition to this key information, the IEP must also specify with respect to each service:

• when the service will begin; and
• the anticipated frequency (how often), location (where), and duration (how long) of the service.

The IEP is a written commitment for the delivery of services to meet a student's educational needs. A school district must ensure that all of the related services specified in the IEP, including the amount, are provided to a student.
Changes in the amount of services listed in the IEP cannot be made without holding another IEP meeting. However, if there is no change in the overall amount of service, some adjustments in the scheduling of services may be possible without the necessity of another IEP meeting.

so two ways of getting speech language services: 1. to qualify for s/l as a special education category on the IEP or 2. as a related service under a different disability area, the team decides based on the assessment information (like your info that shows pragmatic lang. problems) and any other supporting data showing social communication problems. Could just relate in Speech Language Pathologist (SLP) consulting or doing a team teaching approach like in a social skills group with the psychologist or sw or sp. ed teacher, etc....

 

[buddy]

JJJ, I regret it too. I think it is the one thing, if we can get him to talk in 'family therapy" tomorrow, that I will try to better explain. I think I will bring in my own social story about it so we can cover it.

 

[jennd23]

Yeah, I can see how that can turn into a bad way of thinking for him and I probably shouldn't have said it, but what else do you say? Oh its ok honey, you can threaten to kill people and expect no one to do anything about it. Sometimes I just want to scare some sense into him, which I know sounds terrible of me.


As far as the speech at school stuff.....oh believe me, I KNOW what they are doing is wrong. They do not accept/recognize his Autism Spectrum Disorders (ASD) diagnosis. We have had an IEE where she said "maybe mild aspergers" but wouldn't call it official, regardless of the 3 other Autism Spectrum Disorders (ASD) diagnosises I have. He is getting counseling, handwriting, and social skills all under an OHI of ADHD. I am simply biding my time right now until our next review which should be Dec or Jan.

 

[buddy]

OH gosh jenn, you are the definition of warrior parent aren't you?! I didn't mean you shouldn't have said it about the police, just saying I wish for us, that I didn't have to and I regret it. But like you, at that moment, I dont know what else I could have done to stop what was going on. Even if it was medically induced fear/aggression, etc. I had to go to a safe spot and I was not going to drive like that. It is just that he gets so stuck in fears and now is perseverating on that. I can wish for it to be different and regret it but I really have to think about how to present this to him. I will call for help when things are dangerous. Period. But the panic he has over my calling escalates things..... Just like Winnie the Pooh.... think think think....

 

[Liahona]

Maybe you could present it as these are unsafe behaviors... (then list the behaviors) when you do these behaviors others/I need more help and I will call for help. This puts the reason for your calling on your level of support not if he can control it or not.

I agree that a social story would be a good idea for this discussion.

Also, there are some behaviors that will get police/emt involved no matter what the reason behind the behaviors are.

 

[buddy]

Liahona, that is exactly my train of thought but I love your wording about it and will actually add it right now...

Jenn, thanks for starting this thread, you really ended up helping me too! Thanks.

 

[TerryJ2]

I hear you!

I tried for yrs to get some kind of communication therapy, and only got a ridiculously stupid test at the local children's hospital where difficult child looked at simple flash cards to see, for ex, a drawing of a cat, and the word, "cat," so he could match them up. There therapist was almost apologetic.

It's actually kind of neat that his friend told you that "he does this at school all the time." It seems to me that his friend is used to it and doesn't take it personally. What better friend can you have?

 

[jennd23]

JJJ - you were spot on. S cried and cried last night begging to live with his grandparents because I was going to send him to jail. It broke my heart. I explained that I am NOT going to send him to jail, he has to make good choices, and if he makes illegal choices he will go to jail (hopefully not making him think that any bad choice would send him there) but I said if you don't do illegal things no problems! He was pretty sad last night about it still but fine this morning. Even reminded me that as long as he makes good choices he wouldn't go to school.

Also, although not entirely accurate I said they wouldn't put a kid in jail, but that he needs to learn these lessons now to remember when he grows up. :-S Sometimes I suck as a communicator too. Maybe I'm the problem....

 

[buddy]

Well then you are in the same suckie boat that many of us are. As I said, Q is saying a similar story and we did address it today in the hospital. Yeah, I felt a little crummy.... But the fact is I may need to call for help. I will discuss how that conversation went in our update, smile. You are not the problem there just was a problem and since we are human, maybe we thought we were doing the right thing but now we monitor our own behavior and adjust I guess.... Hard not to feel bad when things don't go as we wanted, but it is probably ok for them to learn we are not perfect.