Need to vent (OT)

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Registered: 03-26-2003
Need to vent (OT)
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Wed, 04-06-2005 - 9:49pm

It's been a while but I've been lurking since my last post. Liam saw the neurospych who ruled out anything on the pdd scale, (even though the Aspergers assessment I filled out put ds on the low end of the scale). Apparently we are back to the drawing board there.

Well, I put in my notice at my job last January (teacher, needed lots of notice) and since then the doctor and specialist appointments have been piling up. Both boys have been sick on and off (usual coughs and colds), ds#2 had tubes and an adenoidectomy yesterday so I took the day for that. Dh took today. Now today Liam has become sad, mellow and very tired and I know he has a fever. It was very hot out today and he's a fair skinned red head, so I'm hoping the heat just got to him. However, chances are I will need to take yet another day because dh said and I quote, he "doesn't want the perception that he takes days off left and right." I could have throttled him for that statement. I have to take every day Liam has a specialist appointment as well as all the reguolar sniffles days; Liam has another appointment next week at the Kennedy Krieger Institute and then one again in May.

My boss keeps throwing new things at me as I think he's scared I am going to waltz out in June with nothing done for next year. The stress is just so much right now. I just want to be home with my babies and not be pulled so many different directions. Man, this sucks!!

Dh and I have been raaly edgy and at each other's throats all week. Soimedays I just feel he doesn't get it at all, not even for a second. Thanks for listening.

Dee (Liam 5 big years last week)

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Registered: 02-24-2004
Wed, 04-06-2005 - 10:22pm

HAPPY BIRTHDAY LIAM!!!

I went back to work part-time after my first was born. But when I got pregnant with Nathan, I was thinking about quitting after he was born---and I DID! My dh didn't like taking days off of work either. I was always the one taking days off when Tyler got sick or something. I just knew that it was not going to get any easier when #2 got here! It was hard trying to be responsible for too many things. I am lucky though that dh makes enough that I'm able to stay home, so I am grateful for that.

Anyway, good luck with the appts. Hope Liam is feeling ok.

Michelle

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Registered: 03-26-2003
Wed, 04-06-2005 - 11:29pm

The neuropsyche said nothing on the PDD scale, but did s/he have any ideas what was going on? Able to tell you where his strengths and needs where, etc. If he has sensory issues, processing issues, attending issues, stuff like that. You mentioned you were back to the drawing board, seems the neuropsyche should have given you some answers. If not then is it possible for a 2nd oppinion?

How do you feel about the not PDD thing? Do you agree or disagree? Some folks don't recognize PDD's on the milder or higher functioning end. For those kids you really need someone who is an expert in that area and even then it is a tough call sometimes. Some of these kids just aren't obvious until they are older. Like Dave.

I was worried about Dave from when he was tiny, but even I didn't know if he was on the PDD spectrum. I took him to a variety of specialists and some said no way but something was going on, some said they couldn't tell but didn't think ASD. Even now he has a provisional PDD diagnosis and I am not sure if he is or not. He definitely is SOMETHING. At least ADHD plus something else, it is just going to take a while and a bit of school with peers to figure it out I think. He does tend to show more of the symptoms as he gets older, but is it because of ASD or because of a variety of other differences combined with ASD sibs?

So we are treating the symptoms for now and the ADHD. And always watching and dealing with individual issues as they surface. Understand your frustration and i am sure that neuropsyche eval didn't help getting DH on your side either.

Sending Hugs and chocolate.

Renee

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Fri, 04-08-2005 - 12:25pm

Thanks guys,

Yes the neuropsych did suggest that the Aperger's evaluation that I filled out pointed to certain things that were on the pdd scale; missing social cues, running into social situations like a bowling ball/bull in a china shop, hypersensitive etc. He thought he also detected some auditory processing deficits, but I'm kind of stumped as to where to go for that. We still have to receive the final written report (been over 4 weeks already). I still feel that Liam is definitely very low down on the pdd scale.

The neuropsych suggested that the auditory processing was probably whywe thought it was Aspies, but really it's a separate thing. I just am finding it hard to belive that; I know a lot of kids who are ASD and also have auditory processing issues. I really think they are comorbid. The one thing that came up on all the evals I filled out was social issues/cues and hypersensitivity. We have had the sid dx since he was 3.5. A child psychiatrist dx him with a mood disorder last December and the trileptal he's on has been a real help in stabilizing him. The neuropsych also saw "features" of adhd, but was unwilling to really dx him, although he put "adhd and adjustment disorder" on the referral sheets for Behavioral Psych and the Developmental Ped at Hopkins. Behavioral Psych is next week, but Liam's so stable right now, they may think I'm crazy for bringing him there.

I still feel like we are missing something. I met my 18 year old cousin last week, hadnt seen him in a while) and he was dx as Asd/Adhd when he was 12. He has an IQ of 142, and we had a great conversation about the merits of hyperdrive in Star Wars and Warp speed in Star Trek:) LOL. He is sooooo Aspies I almost cried; as even though Liam is much more open to cross conversation and definitely nothing like my cousin Ben, I still saw huge similarities. My girlfriend was with me and she definitely agreed that although they were on different levels Liam and Ben had definite similarities. I just want someone to hear me and stop bs-ing me. Just because he didn't come in stimming and handflapping all over place and he is charming and bright, noone will listen to me about this. Am I crazy?

Thanks, sorry for the lengthy ramble

Dee (Liam 5)

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Registered: 10-03-2004
Fri, 04-08-2005 - 3:19pm

Dear Dee,

I feel for you, but even without a spectrum dx, there are so many things to try for what you are discussing, missing social cues, sensory issues, etc. Our insurance doesn't cover ANYTHING neurologically based, so the dx meant nothing in terms of getting anything paid for anyways. Do you need this dx to get more services? We got some through school district and others we pay and deduct on our taxes.

My son's dx is borderline (mild PDD-NOS with a ?). He has some symptoms yes and some no of ASD. We have seen so much improvement with lots and lots of OT, special schooling, psychotherapy, RDI, speech, play therapy, small groups, etc.. He is becoming more and more open to other children, now has many friends and is adapting better to social situations. It is sad how off he gets occasionally, but this is now rare and he is becoming more aware and even self-aware. I definitely see a big benefit from all the work he is doing, and as he is only 7 years old, he has years to keep working!

Our son does have auditory processing problems, and both speech therapy and OT has helped him with this. It used to be that we would need to be careful about how we spoke with him, much less so now.

Anyways, good luck to you. The borderline kids are absolutely the hardest to figure out!!! But it seems to me their long-term prognosis are more promising. I don't think you are crazy. Your son is probably just unusual enough to be stumping people. We were told our son COULDN'T be ASD for years, and well, he sort of isn't. And sort of is.

yours,

Sara
ilovemalcolm

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Registered: 03-26-2003
Fri, 04-08-2005 - 6:36pm

Unfortunately this is a huge frustration and shows the downfalls of the DSM and such diagnositics. You are not alone, trust me. There are alot of kids that my psychologist calls "up in that end of the spectrum" who have tons of overlap with different disabilities. A bit of this, a bit of that, who don't fall cleanly into any one diagnosis. That is Dave to a T. She feels it important to identify the most significant challenge of the child and that which fits most appropriately and diagnose that and only diagnose comorbids if they are clearly separate and become so significant that they need separate treatment. Others feel it is important to label all the comorbid conditions in an individual child to be able to see a clear picture of them. Alot of this depends on the child too.

DAve was diagnosed PDD-NOS because he has some symptoms but not the full clinical picture and she cannot tell where exactly yet he will fall. he also has a diagnosis of ADHD and one of SID. He just turned 5 in late January so we are at about the same place. Some have said mood disorder possible bipolar, some OCD, some possible AS. We know there is something but as of yet with his age it is hard to tell.

Auditory processing problems are common amung ASD kids but you do not have to be ASD to have auditory processing disorder. In fact APD or CAPD are considered a learning disability. It is also common amung kids with ADHD and other similar stuff. Comorbid just means when a child has diagnosis in co-occurance with others so it changes for each child. Some typical diagnosis for kids like this are ADHD, APD, ASD, Bipolar, mood disorder, tourettes, OCD, dyspraxia, hypotonia, sensory integration disorder.

Diagnostics is an unexact science. I think right now what may be closest for your son is PDD-NOS to kind of cover it all, but that depends on the diagnosticians. SOme won't consider PDD unless the child is clearly autistic. Hopefully the neuropsyche report more than an individual diagnosis can really give you a good picture of how Liam learns, what his strengths and needs are and what to do from here. Hopefully it will help you get supports for him in Kindie. Does he have an IEP? If not you can give it a try or you can request a 504 plan. We have put that in place for Dave for next year. There isn't much on his IEP, but there is a behavior plan in place and there will be overlap, transition planning and follow up by the district specialists.

BTW, I have a friend who's son is BP, OCD, PDD-NOS, tourette's, and ADHD. Mike is AS, SID, APD, but also has had and fits diagnosis of ADHD, OCD, chronic tics (r/o tourettes) and mood lability/mood disorder. His doc just says he is AS, but he looks like Jack Nickolson in as good as it gets walking without stepping on lines. Cait is AS, partial seizure disorder, and also has had ADD, APD, dypraxia, SID, hypotonia, chronic tics (?tourettes), etc etc. What you are seeing is pretty common and it will take a while to work it all out.

Our own Sio likes to say her Liam has "Liamism"

Renee




Edited 4/8/2005 6:41 pm ET ET by rbear4
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Fri, 04-08-2005 - 7:05pm

Dee,

I'm glad I'm not the only one who is working on being a stay-at-home-mom because of everything going on. My job doesn't know it, though, and I will probably only tell them at the last minute. My husband is the same way, so everything is my responsibility. I've been taking off tons of days for doc appts., psych appts., teacher/school appts., group therapy appts., etc. It's just crazy. I think when I do turn in my notice (at the end of May) no one is going to be surprised. In fact, they might just be relieved!

Tina

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Registered: 09-20-2004
Fri, 04-08-2005 - 7:18pm

Renee,

How are you dealing with the ADHD? We've tried four different psychostimulant meds for our daughter(age 7), all at low doses: Ritalin (had psychotic episode), Adderall (had severe emotional crashes when coming off meds), Adderall XR, and Dexadrine (hairpulling, skin picking) - these more severe side effects are beside all the regular ones we experienced (bruxism, insomnia, stomachache, headache, tachycardia, etc.). One psychologist I visit has a theory that she might be mild Asperger's and that is why she responds to the psychostimulant meds with nervous tic behaviors. Then I had someone else tell me there are many children with Asperger's being treated with psychostimulants? Huh? My daughter just happens to be very sensitive to these types of meds. Maybe that will change as she gets older. I am curious, though, as to how you are dealing with the ADHD.

Tina

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Registered: 03-28-2003
Fri, 04-08-2005 - 8:43pm

Dee,

There are a lot of other things out there that can cause a child to "look" autistic, even though they don't quite fall into an ASD dx. For example, there is the whole chromosome issue, like Fragile X, XXY, and XY mosaics, Nonverbal learing disorder, high metals, or even a bunch of co-morbidslike CAPD, SID and ADHD mixed with Dyslexia (my son's Liamism;). Also, at five, I think it is too early to tell (just based on my experience with my own Liam). Developmentally, he may not be there with some things just due to his age. A lot of kids who are quite high on the spectrum start out at five with a severe ADHD DX, then around seven or eight, the mom goes back to the doctor (maybe even the same one, and says "are you sure?" and at that point the doctor will say "ya know, it was so obvious! He is an Aspie!") That just happened, or sort of, to Charlotte.

In my case, my Liam got older and a lot less "autistic-like", so it was more of the same doctor saying "I told you I was right!" Personally, I think Renee's doctor has a better attitude about it all! Children can move up, so to speak, when it comes to autism dx's. At least with a PDD-NOS DX you can get into some doors that you just can't get open without it. My point here is, at five, it can just be real hard to tell what is going to happen.

What I did was I just addressed the issues at hand as they came, trying to simply do the very best for my child with the information I had. I think it was a workable strategy. I could say "Hey, school. My son has social issues. Can you work on that with him? By the way, he also has this processing problem, how can we help him with that too? And on it went. You often don't need a DX to address the issues, but it does often mean you have to pay for a lot of stuff you might have gotten for free otherwise. I do say a DX is better, but if you just can't get one, it isn't a total road block.

By the way, for the CAPD, you might want to consult with an SLP who is familiar with it, and start working on it from that angle. When he is closed to seven, seek out an audiologist who specializes in CAPD,(he needs to develop a vertain part of his brain, and the name of that part currently escaped me, so that is usually done around 7), and get him evaluated specifically for that. I did it privately, and as an audiologist is considered "medical" it was covered, and so was the therapy we did with him (FastForWord).

Here is a CAPD link for you: http://www.tsbvi.edu/Outreach/seehear/spring00/centralauditory.htm

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Sat, 04-09-2005 - 1:49am

How do I deal with ADHD stuff? Diet, sensory integration, behavior systems, supplements and mostly just taking a deep breath.

Psychostims do work for some kids with ASD, but also for many others it will make them more obsessive and anxious. Some use a combination of stims with an anxiety med. No Stims worked for the older 2 at all for many of the reasons you said. With ds even tried mixing a anxiety with the stim and still no go. (youngest is on ritalin and so far ok, but recently getting in lots of trouble at school do to rigidity, anger, etc). There are even ADHD kids who supposidly don't respond positively to stims, though I would guess there is possibly something else going on.

Unfortunately, one thing I have learned to accept for now is that their attending skills will never be perfect. There is no med to help them and I have to help them cope and find coping mechanism. So we use checklists, timers, reinforcers, etc.

For what it is worth, I am self diagnosed ADHD myself and never used meds. I don't think I am terribly severe and though never officially tested, have been told I likely have a decently high IQ which made coping easier. For myself I find supplements and modifications work fine. I have lots of things to help me organize. I have a franklin planner (wonderful thing) for my daily schedule. I use flylady prinicpals to keep up with house stuff. I have a chalkboard in the kitchen to write myself reminders. And a DH who understand and will remind me and write me notes.

If you want to know in specific the behavior programs and such I use with the kids I will be glad to share. I will tell you for Mike, I still have to stay with him and prompt him through each step because he gets distracted, mostly with his obsessions. In school though they are able to attend when they understand the work, their sensory system is well balanced and they are not stressed, lol. Cait does great with modifications and checklists even at home. but she looses everything.

I have just learned to accept that my kids won't be perfect and oh well. We do the best we can, lol. If they lose something, forget thier lunch, backpack, glasses, don't finish what they are supposed to, oh well. Heck I have been there too. Used to bug me, now I remind them and try to come up with ways to help them deal with it.

Renee

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Registered: 09-20-2004
Sat, 04-09-2005 - 10:08am

We use charts and behavior modifications for Elizabeth, too. She does well at school academically, but her issues are more social (impulse control, being over stimulated, etc.) I would be interested in hearing more about the methods you use, including diet. I think the teachers were a little disappointed that I took her off the meds, but OH, WELL! I just wanted to tell them, "Use the accommodations I've suggested in her 504 Plan and DEAL WITH IT!" She does fine with redirection and someone to intervene in social situations (before it is too late, that is). Now that I've been VERY involved with the school (I even spent an entire day with her in class), the teachers are not treating her so much as if she were a discipline problem but more as if she just needs some things handled differently. This helps Elizabeth feel better about school and do better as well. I think they believed if they "punished" her enough she would eventually behave. Doesn't work that way! Slowly but surely things are getting better (with the school), but it takes a lot of hard work, doesn't it?! Plus, we have a school that really fights us on ADHD being covered by a 504 or IEP.

Tina

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