Special needs and neurologist/partially a vent

[JTsMom]

Can someone give me a quicky rundown of what happens when you take a special needs kid to see a neurologist? What types of tests do they do? Was it helpful for you?

I'm starting to feel like all we do is go from specialist to specialist, getting evals, doing therapy, etc., and nothing every changes. If it's really going to be worthwhile, or at least has a decent shot at being worthwhile, I'll do it, but honestly, I kind of feel like it would be a waste of time and effort. Sigh.

Does anyone else ever feel like this? I just feel like I've been trying and trying, and there's no point- we are where we are, and it's not going to change, and maybe that's ok, kwim? Maybe that's just who DS is supposed to be, and we need to stop trying to "fix" him, and just learn to deal as best we can.

[sariana]

What would you hope to gain from seeing a neurologist?

DS saw one when he was 2 because he was walking on his toes and he was a 32-weeker. We took him to the neurologist to have him assessed for Cerebral Palsy.

We saw the same neurologist a year later when DS was accepted to the autism program in our district. I would not have gone to a neurologist then, though, if we did not already have a relationship with one.

Do you have a specific concern that you think a neurologist can address?

I know how you feel about seeing all the specialists and not getting answers. DS has seen OTs, PTs, and that neurologist. He peridiocally sees an orthopedist. We have seen autism and ADHD specialists. Besides talking about medications, they have not had much to offer.

We are happy with the services DS is receiving at school right now. So for now we are proceeding with that. But it is frustrating to have so many appointments and so few answers.

[Elilly]

Hmmm... Graham has seen neuro, developmental peds, gastroenterologists, immunologists, and ENTs. We have done SLP, OT, DT, ABA, RDI etc. I don't know that the neuro "did anything" for us except screen for seizure activity. Other than that, the most helpful thing we have done is a gluten and casein free diet coupled with therapy and the DAN protocol http://www.autism.com/dan/index.htm

[sste]

Does your son have a diagnosis? Or at least a short list of possible diagnoses? I would try to find a leading evaluation center (e.g., I know vanderbilt is excellent for language disorders, yale among others is nationwide center of excellence in autism). We had a friend who went to dozens of docs and experts for years for her dd's language disorder and one trip to vanderbilt, admittedly out of state and a pain, gave them a clear diagnosis and treatment plan.

[JTsMom]

What would you hope to gain from seeing a neurologist?




Answers, and a magical list of things to do to help DS function like an average kid. Is that too much to ask? :rotflmao:

What we've gone through and why is a really long story, but I'll try to summarize.

-DS has a complex. heart condition. He had surgery to correct it at 3 months old, as well as a cath repair at 13 months. My gut, and at least one specialist, says that this is a huge piece of the puzzle. Research, and stories from moms of kids with similar defects, backs this up.

-Piece 2- DH was dx with severe ADD as a kid (today, it would be ADHD). He was one of the first children on Ritalin. DS definitely has attention and hyperactivity issues.

-DS also has sensory isues, serious problems with frustration, uncontrollable verbal outbursts, some mild fine motor issues, and previously had a language delay. He exhibits ASD-like behaviors (they have diminished with age though, and nobody feels he actually is on the spectrum). One of the issues that stands out for me is his continued use of delayed echolalia. His language skills did improve with speech, but he still does not use spontaneous language like most kids his age would. For example, he would never say, "Hey mom, what did you pack in my lunch today?". He speaks clearly, but often about the same subjects. He obsesses about certain things. In the middle of a conversation, he might start quoting Thomas videos, for example, for no apparent reason. He seems to need to have things repeated several times, and has trouble following some directions, especially multi-step ones, however he performs just slightly below average on tests for auditory processing.

-I think he tends to fool evaluators, specialists, etc., unless they know him well. A lot of what goes on with him is subtle, and he can come across as perfectly typical on good days.

-His behavior is extremely challenging. I have tons of experience with kids, and take my word for it, he's not a typical kid. At all.

-We have done:
*Speech and OT for about 2 years. Speech did help in some ways. He's plateaued though, and although his therapist recognizes that he still has issues, she doesn't know what else to do with him. OT- they try really hard, and have helped some with some of the sensory stuff, and some of the fine motor stuff, but they are at a loss too.
*Neuropsych eval- He felt DS's issues were cardiac related/and possibly ADHD related. No answers, few suggestions, see ya in 2 years.
*School evals- didn't qualify for diddly.

-School is a real challenge, as is daily life. I can't complete simple errands b/c his behavior is so bad. He screams frequently. He runs off. He does not have a reliable sense of danger, and will do things like touch stove knobs and run into the street. He will not respond to me screaming "Stop!", most times.

-Academically, he does well, if I'm the teacher, and we are at home. In school settings, he gets quickly overwhelmed.

-Socially, he LOVES to be around other kids, but doesn't relate well to most of them. He has a hard time with conversations and rules.

-We have tried almost every parenting technique known to man (except for physical punishment) with almost zero success. Everyone involved believes that DS is motivated to do well, but can't. He can tell you the rules, he can explain why the rules exist, he has remorse when he goes off track, he just can't control himself.

The neuro visit was suggested by his OT, and his ped. Honestly, I can't imagine what she/he would tell us that we haven't heard before. I feel like we know why he is the way he is and where the challenges are, but not how to really help him.

As K gets closer and closer, I'm really worried. He isn't outgrowing this. Nobody can help. He doesn't qualify for school services, but school is not going to go well for him. He can't sit still, he gets overwhelmed when around more than a couple of kids, he can't control his frustration level, and he frequently can't pay attention.


I warned you it was a long story! ;)

[egoldber]

:hug: I do think with what you described, that a ped neurologist is worth a shot. I assume he has already seen a developmental ped?


He doesn't qualify for school services,

If he got something like a PDD NOS diagnosis, would that qualify him for services in your district?

But I hear your frustration. It's hard. We have not been through anywhere NEAR what you have, but I remember dragging Sarah to OT for almost 2 years and thinking at the end that it was all just a big waste. We got nothing out of it and it did not help or solve anything. They would have been happy to have us keep coming at $150 a pop, but it was not making any difference.

So then we did nothing for a couple years. And you know what, she did grow out of some things. We had another comprehensive evaluation when she was older (7.5) and at that time they could tell more vs when she was younger. I think we are now on a better path than we were then.

So I do think that sometimes you do just have to wait things out and let them grow and develop a bit and just see what shakes out. And in the meantime, you try what you can, see what helps (if anything) and do that and abandon what doesn't.

[JTsMom]

That's actually pretty helpful Beth, thanks. I just feel like a slacker "giving up", kwim? It's not that I don't care, but why continue to put all of us through this? You know what works? Staying home. As much as humanly possible, b/c that's where he does well. Especially if it's just the 2 of us. It kills me that nobody else gets to see it though.

We haven't seen a developmental ped- it was kind of a choice between that and a neuropsych as the evals were supposedly going to be similar, but I chose the latter b/c his cardiologist suggested going that route, and b/c I really believe that his heart condition and/or the surgery is the key. We could try a developmental ped, but nobody seems to think that's the way to go.

[pinkmomagain]

I'll tell you a little story. DD2 started down a similar path when she was 3 yo. Nursery School felt I should get her evaluated (a list of issues too long: toe walking, stimming, zoning out, eye avertion, low muscle tone, anxiety, blah, blah, blah). I was devastated and took her to so many specialists. The 1st was a neurologist who said that she was too young to dx, but it could very well be an attentional issue...but again, no definitive answer...just start and keep doing therapies. What? No dx? No exact rx to make her better? Off we go to more neurologists, neuropsychologists, psychologists, ot, pt, speech, social group, seit teacher, blah, blah, blah. As the years pass, many issues subside, some new ones emerge, still no answers, not approved for services going into K. She manages in a regular classroom, despite all my worries...some issues, but nothing horrible or major. Third grade rolls around, she's bright but has a hard time persisting through schoolwork and is daydreaming alot. Have her tested...she finally gets a dx of ADD-inattentive type -- an attentional issue, just as the 1st neurologist said all those many years ago. (She also has an anxiety dx too.) She's on meds, has excellent grades, is doing *better* socially, is the most creative person I know and wows me everyday. Everyday is still not berries and cream but it's like she's a different person from that little 3yo so long ago...don't know how much is her natural development and how much is all those services, but there you have it.

I don't have anything else to say. Just thought maybe that story might help make you feel a little better.

[JTsMom]

[QUOTE=egoldber;264899

If he got something like a PDD NOS diagnosis, would that qualify him for services in your district?

[/QUOTE]


Sorry, skipped that part. Maybe, but although I've tried to stress the ASD like stuff, that dx gets shot down rapidly every time. The school evals we did were actually in a different district, so I could insist that we do them again, and the info that the neuropsych gave us would actually help to secure some type of services- I just don't know what would help. There are simple, in-classroom things they can do, but I think they'll do those regardless. I actually went and talked to the school counselor before we bought in this district, and she was very open to trying anything I thought would help.

[crl]

Quite a bit of what you describe is familiar to me on some level. (We don't have the heart piece, but DS had/has lots of "minor" delays, anxiety, attention to task issues, sensory issues, fine motor delays, pragmatic language delays, behavioral issues, etc.)

If I were you, I'd be looking for a way to get school services and accommodations. You said he doesn't qualify and I don't know the history there. But your son sounds a lot like mine, only with more significant impulse control problems. And we've been getting school services for years now. Personally, I'd probably be looking for an excellent developmental pediatrician to give me some ammunition to restart the school evaluation process and see if I couldn't get an IEP.

The other thing I'd be looking for is a plan to help over the long haul with the impulse control issues. I don't have personal experience, but I would research congnitive behavioral therapy because I've seen some articles about that helping with ADD and impulse control.

I don't think a neurologist would be where I'd go to get the two things I'd be looking for. So I wouldn't do it. I'd try to go to a developmental ped practicing in a setting that has lots of resources to refer you on if appropriate. If you lived in the area, I'd suggest Kennedy Krieger because that's where we went for our son and I think that sort of place would be what I would be looking for.

This is all based on my personal, limited experiences though. You might try asking the people who are suggesting a neurologist why they are making that suggestion. Maybe they suspect seizures? Or have some other reason for their suggestions.

Mothering dot com's forums include a special needs forum. You might try posting over there for suggestions.

Please feel free to ignore everything I've said if it's not useful to you! And I hope you get what you need!

Catherine

[JTsMom]

Oh, and one more new fun thing- he's starting to exhibit all sorts of strange anxiety-like behaviors about random things- a balloon he'd been playing with for a week, the noise the washer makes, toys he loves, etc.

[Sillygirl]

Not sure about the pediatric side, but the unofficial slogan for adult neurology is "Diagnose, and adios." (I think other docs use it, not the neurologists.) They have lots of cool diagnostic tests, but not much in the way of treatment. I'd be pushing for a developmental ped or neuro-psych eval if it were my kid.

[JTsMom]

Catherine and Gina, thanks for posting- I'm going to give a better reply a little later. I MUST go play trains, right NOW!!

ETA: You too, Katie.

[egoldber]

And honestly, I really don't know what a ped neuro would do or say differently than a developmental ped would.

Hoping to totally NOT freak you out here, but some of what you describe sound like it could be Tourette's (most cases are mild) or neuro in nature. That's why I think a ped neuro may be a good choice.

Another thought, and I know you are already in a large metro area, is to seek further afield for a specialist. Ask the cardiologidt, for example, if there were anywhere in the country he/she would take their kid to be diagnosed, where woudl they go? It may be worth a trip to Duke or Hopkins or CHOP or Yale. KWIM? A friend of mine (in a different part of the country), recently made a trip to Hopkins for an evaluation of her son because it has the best program in the for his issues.

So sometimes seeking the further afield specialist can be helpful for that expertise of diagnosis. Not that you would do treatment there, but they can then coordinate with your therapist/ped at home for on-going treatment with periodic evaluations.

Good luck. :hug: But with what you describe, I do think that finding SOMETHING that would get him a diagnosis and an IEP for school is pretty critical.

ETA: Kennedy Krieger is where my friend took her son. It's at Hopkins.

[crl]

Yeah, there's a lot of overlap with tourettes, autism spectrum, ADHD/ADD and other things. And lots of those things are neurological in nature. But my impression (based on really limited data) is that neurologists tend not to treat much, if that makes sense. I think a developmental ped is in a better position to look at the whole kid and to follow-up with treatment plans. But, again this is based just on my really limited experiences.

(Oh, and Kennedy-Krieger is Hopkins for this kind of stuff, it's a subdivision or whatever. I was really, really happy with KK. I'm actually trying to talk dh into continuing to use kk even though we now live on the other coast! And the new ped I'm switching us to here actually thinks it's a pretty good idea.)

Catherine

ETA: Sorry, cross-posting with Beth's edit!)

[crl]

Oh, and one more new fun thing- he's starting to exhibit all sorts of strange anxiety-like behaviors about random things- a balloon he'd been playing with for a week, the noise the washer makes, toys he loves, etc.

Lots of that kind of anxiety around here too. When he was little he was freaked by trash cans, garages, automatic garage door openers, birds. . . . Nowdays (he's 6.5) he's easily freaked by television/movies, still worries about birds sometimes, occasionally throws himself at me and starts trying to climb me like a tree because there's a dog nearby. . . .

I don't have any good answers for that stuff. Most of it we've just had to wait for him to outgrow. Occasionally I've come up with a good line (like the garage is Rocket's--from the Little Einsteins--home) and it's worked.

Catherine

[HIU8]

We are in somewhat the same place. DS has a dx of SPD. He is at OT 2x a week and it has made a difference. He does not shy away from people and he is doing more gross motor things (like climbing, jumping etc...). At first we went to a social worker who directed us to a child psychologist who said she felt his issues were neurological and psychological. In addition to OT, we have seen an educational specialist who evaluated DS and is helping us figure out the best placement for K next year. We opted to stay away from our public schools for now b/c SPD won't get him services. We were also told that a lot of his issues could be due to immaturity, and that if he has not outgrown them by about age 7 then we need to look into testing for ADHD and possibly APD. We also will be doing a speech/language eval shortly to see if DS also needs these services.

DS has good days and bad days. If you met him you might have said he is a shy child--NOT anymore. OT and TL have really helped him blossom. He also does better when he is shown and told something (he is a visual learner). With the therapuetic listening he has really started communicating well with peers and other adults (something he would shy away from before). This does not mean that when we go out he never throws a temper tantrum. He does, but they end quickly as he is able now to be reasoned with and gain control over himself. I'm hoping that in K he starts to mature and that a lot of his issues will start to fade. However, I'm fully prepared to have him undergo the testing for ADHD and ADP and go from there with treatment.

Also, FWIW, the OT suggested we may want to switch to a developmental ped. We have not done so yet, but have not ruled it out

[crl]

Does anyone else ever feel like this? I just feel like I've been trying and trying, and there's no point- we are where we are, and it's not going to change, and maybe that's ok, kwim? Maybe that's just who DS is supposed to be, and we need to stop trying to "fix" him, and just learn to deal as best we can.


I'm sorry I keep posting, but I realized I didn't address this piece at all. I think it is possible and wise to accept our children as they are. But I also think it is often possible and wise to offer them help at the same time. Neither is easy sometimes!

DS has definitely benefited from services and accommodations. Yes, I think he would have outgrown many things without help. But I think he would have had to work much harder to do it by himself. I also think that struggle would have increased his frustration level and made his behavior worse. Additionally, he could not have gone to preschool without special education services. No "typical" preschool would have kept him. And I believe that would have put him in a worse position with his already weak social skills. He's having a successful kindergarten year and I believe that is largely due to (1) services he's received up to and including during this year and (2) the extra year of preschool I insisted on gave him a chance to "catch up" developmentally.

So, for us, services have been worthwhile and beneficial. I don't think this is automatically the case for every child, but has been for us.

I'll stop now, I promise. I hope playing trains was fun!

Catherine

[mytwosons]

Sorry, skipped that part. Maybe, but although I've tried to stress the ASD like stuff, that dx gets shot down rapidly every time. The school evals we did were actually in a different district, so I could insist that we do them again, and the info that the neuropsych gave us would actually help to secure some type of services- I just don't know what would help. There are simple, in-classroom things they can do, but I think they'll do those regardless. I actually went and talked to the school counselor before we bought in this district, and she was very open to trying anything I thought would help.

I would request another school eval. Things that might not have seemed too far off from "normal" when he was younger, might be a bigger red flag now. But, I'd also see a developmental ped. At least around here, schools do not want to diagnose anyone with an ASD because then the child is eligible for school services until they graduate. DS1 was diagnosed by a Psychiatrist and even with that diagnosis, the school district would only categorize him as developmentally delayed since that only guaranteed him services for three years.

[KpbS]

I would also vote developmental ped. But one that is very well recommended. You might end up at the neuro but someone who would take the whole picture into account and be qualified to assess the results/input from the various specialists you have already seen would be invaluable. Have you had any genetic testing done in the past?

[JTsMom]

I'll get more detailed in a minute, but a lot of you seem to think the neurologist might be a waste, but the developmental ped would be the way to go? And you think that a visit there would be significantly different than what we've already done with the neuropsychologist? Here's a summary of what we did with him:
-Parent interview without DS. Filled out lots of history paperwork, Behavior Assesment System for Children_Second Edition, Behavior Rating Inventory of Executive Function, and Adaptive Behavior Assessment System, Second Edition.
-2nd Visit, testing-Bracken Basic Concept Scale- Third Edition (School Readiness Composite), Differential Ability Scales- Second Edition, Peabody Picture Vocabulary Test- Fourth Edition, NEPSY-II (Comprehension of Instructions), Wide Range Visual Motor Assessment (Matching, Pegs).
3rd Visit- Parents only, reviewed findings.

ETA: And this visit, and all of his therapy was through Children's Healthcare of Atlanta.

When you look at the results of the testing, you'll see the same thing over and over- scored low, and they attributed it to lack of attention/inconsistent attention.

[JTsMom]

Catherine- don't dare apologize for posting- I'll take any scrap of advice anyone throws my way! Thank you!

What services, specifically, have been helpful for your DS? I don't even know what else to ask to try at this point. I have heard of CBT helping with ADHD behavior, and I do need to look into that some more. I wonder if I can get insurance to cover it. KK looks amazing. We do have a very highly regarded center here that specializes in ASD, but also works with kids with other issues- wonder how they'd compare. The wait list to get in is insane, but it wouldn't hurt anything to put ourselves on it, I suppose.

[JTsMom]

Hoping to totally NOT freak you out here, but some of what you describe sound like it could be Tourette's (most cases are mild) or neuro in nature. That's why I think a ped neuro may be a good choice.



You can't possibly freak me out about this stuff. Seriously, if I could put a label on it, and have a plan to deal with it, it would be a relief. I didn't realize most cases of Tourettes were mild- I really don't know anything much about it, but that may be worth looking into.

[JTsMom]

Have you had any genetic testing done in the past?

Yes, at birth. They do every imaginable test when it comes to heart defects. Genetic testing, MRIs, CAT scans, etc.

[JTsMom]

And for post number 5 in a row, just wanted to say thanks again to everyone who has posted.

[cchavez]

Even though he does not have an ASD diagnosis, his issues are definitely spectrum related. Do you want an official diagnosis and an RX then go to a neurologist. Developmental Ped might be a bit better but in my opinion, a DAN! dr. would help you out the best in terms of treating your son. We have made great progress with our DAN doctors. We still do OT and TLP with bone conduction too as far as therapies. I am also going to start some exercises from Disconnected kids. Where are you located? Are there any DAN! drs in your area? There are even some chiropractors that follow the DAN! protocol and get you startd. My son does see two MD's though.....good luck!

[JTsMom]

Just in case anyone wants to glance at it, here's some info about CHD's and school and behavior problems.
http://tchin.org/resource_room/CHDSchool.htm


And here's a little blurb.
What are the best treatments for these problems, and are medical therapies safe in children with CHD?

Unfortunately, the research into the treatment of the problems I've outlined above is still in its infancy. It has been only in the past couple of years that the scope of the problems of inattention, hyperactivity, school and behavioral difficulties has been recognized. Prior to that time, there were simply not enough children old enough who survived with different forms of complex CHD for this to be fully recognized. Increasingly, physicians who care for young children with CHD are now suggesting formal developmental testing in infancy and the preschool years to identify potential problems and institute therapies such as speech therapy, occupational and physical therapy, and to recommend changes in learning environments that facilitate learning in children with different strengths and challenges.
In my opinion, there is insufficient data at the current time to comment on the safety or potential benefits of the psychotropic drugs (for example, stimulant medications for ADHD, anti-depressants, etc.) in children with CHD. Many of the psychotropic medications currently marketed for children with structurally normal hearts slightly increase the risk of rhythm problems; children with CHD are possibly at increased risk for rhythm disturbances when using these medications. It must be emphasized that no large study has determined how safe (or dangerous) these drugs are in children with CHD, or even if they work the same way as in normal children. The decision to use medications to deal with behavioral issues or ADHD must be individualized to the child, balancing the unknown risks of these medications in children with CHD against the lifelong implications of academic and social difficulties. Close follow-up with the child's cardiologist is warranted when beginning any new medication.




And FWIW, DS's cardiologist said that meds are what seems to work in his experience, and confirmed there is no evidence that using them is a great idea for these kids. That's a fun gamble, huh? :banghead:

[JTsMom]

DAN! and specialized diets are one route we have not explored yet, and I think my hesitation in that area is that I feel so strongly that at least part of the issue is cardiac related, so I just don't feel like the same stuff that would work for ASD kids would work. Maybe it's just me not knowing enough about why these things work though.

The one food related thing I have noticed is that DS reacts STRONGLY to dyes, and I avoid those entirely. We eat mostly organic/natural. We stay away from HFCS and preservatives. We do occasionally eat out though, so some of those things will sneak in. I could try the diets- in fact, I've strongly considered it. If I felt like that would be the key, I'd do it in a heartbeat, but I guess I'm just reluctant to make life more challenging than it already is.

[crl]

Since you asked. . . . .

We had a very not positive experience with a neuropysch. (As in, 4 years later and I'm still angry.) So that colors my bias towards developmental peds. I think the big advantage of developmental peds is that they are MDs. So they are trained in and competent in the medical pieces of the puzzle. Especially with the cardiac history and facing the possibility of meds at some point, personally I'd feel better with a developmental ped than a neurospych. But if you liked the neurophych you saw before there's no reason you can't call and say, if we come back can you give us a dx or at least an updated report for us to try to get special ed services.

At this point where ever I went, I'd go in with an agenda of getting a diagnosis or other ammunition for getting services from the school. And I'd be upfront about it. Tell the person, I think my son will need help in school and I need a report from you that will help me get it for him. Your son is older now, I think a good developmental ped should be able to give you something that would help with that battle.

As far as where to go, I don't have any real ideas about how to tell what is a good place. I would ask around in your area a lot. Ask all your doctors (ped, your gyn, your gp, any specialists you see), ask at the school, ask all the parents you know. Google any recommendations you get.

As far as services, DS has consistently received OT and ST, first through EI and then through the public schools. I've never gone private so I can't really help with the insurance thing.

ST has been amazing for him. First they cleared up his significant articulation issues (by age 3!) which allowed him to start really communicating with us. That really reduced his frustration levels and also allowed him to take the next steps in language. Until he started getting the positive feedback of communicating, he wasn't trying to string words together and so on. We then moved on to pragmatic language difficulties (a victory that we had overcome articulation, but hard to face that there were still more language challenges). His STs have really worked with him to develop conversational skills. Things like turn-taking, watching for cues that your conversation partner is listening, talk about things other people are interested in, being able to tell someone what a story was about, and so on. You'd be hard pressed to know that he has had language difficulties anymore, yet that is actually the basis for his elgibility for special education (which we are likely to lose at the end of the school year). And yes, some of this just getting older but I firmly believe that he has made much more progress with help than he would have without it.

OT has also been good for him, although less amazing. He has sensory integration issues and I've never felt that OT helped all that much. School OTs tend not to focus on this, although they have tried some accomodations along the way that didn't help. But even when he was in Early Intervention and it was a big focus, I didn't find this the miracle cure that other people have. His sensory issues have been comparatively minor and I've mostly just accomodated them (soft clothes, didn't go to chaotic indoor playgrounds, noise blocking headphones for public bathrooms, etc.) OT has helped with his fine motor skills. Honestly, once we got past self-feeding and dressing skills, I stopped caring a heck of a lot about these. He still struggles with handwriting, cutting, etc. But I don't see those as life-long issues (everyone types everything, who cares if he can't color inside the lines, etc.) So while OT has helped with those issues, I don't see it as transformative in the same way as I see the speech stuff.

Just being in a school setting was so good for him. He does very, very well with other kids as models for behavior. So being a special ed student in an inclusion preschool was huge for him behaviorally and in acquiring appropriate social skills.

As a kindergartner, it's been pretty important that his IEP allows him to retreat to a quiet room with a familiar adult when he is overwhelmed. He's had a couple of crying breakdowns and just needed a safe place to recover. Also, because he has an IEP, his teacher knows what to expect and is cued into watching him to see if he's starting to get overwhelmed. For us at this point, it's more about accommodations than services at school.

I hope some of this has been helpful!

Catherine

[Elilly]

I know that you see the diet as being challenging, but, it could make daily life less challenging. A gluten free diet has been shown to help numerous neurological and autoimmune conditions. I don't want you to feel as if I am shoving this down your throat, but given your frustration and wanting to help your son, don't you think it's at least worth a try? I can tell that you want to help your son, that you are wanting to find more answers etc. The DAN! data shows that 70% of kiddos on the spectrum improve on the diet. There are tons of resources out there. Please pm me if you want any help getting started..... I'm off my soapbox now. FWIW, DS never qualified for services through school etc. but he has greatly benefited from the diet and is now mainstreamed with "food allergies" ;)

[crl]

Aack. I keep thinking of something else.

The one thing an OT did for us that was HUGE when DS was little was help me set up a visual schedule. It was a bunch of little pictures of our activities laminated, cut up and backed with velcro so I could organize them on a strip for DS. It helped hugely with his behavioral issues. A lot of DS' issues seem to me to stem primarily from anxiety so anything that increases predictability in his day has been good.

I find that people who work with special needs kids know all kinds of useful "tricks." And it can be hard to say, it was the OTs blah, blah, blah therapy that was a miracle for us. But all the little tricks add up to making life much more doable for all of us.

Catherine

[cuca_]

Like others have suggested, I would do a developmental pediatrician, rather than a neurologist. DD1 has sensory issues, ADHD and LDs. We have seen two neuros, 2 developmental pediatricians, a neuropsychologist and a psychiatrist. We did not get answers for a long time, so I know how you feel. I think the most important part is finding someone that is good. We love the developmental pediatrician that we currently see, for several reasons, she gave us specific guidelines for the school, referred us to a great neuropsychologist and is available via email and phone to answer our questions.

I'm sorry that you did not have a good experience with the neuropsychologist. In our case, the neuropsychologist was key. We asked for a referral b/c DD was in public school with services and things were clearly not working. The neuropsychologist was the first professional to give us a "roadmap." She also suggested several private schools for DD, because we were not happy with the public options. She also suggested additional therapies and specific providers.

I would go with a developmental pediatrician and if you can, I would try to find another neuropsychologist.

I think finding good doctors who are accessible is key. I cannot tell you how many times we have contacted the developmental ped and the neuropsych, to run a situation by them or get advice. This was especially helpful last year when we were dealing with a crappy school situation.

HTH
Good luck!!

[alexsmommy]

Sorry, skipped that part. Maybe, but although I've tried to stress the ASD like stuff, that dx gets shot down rapidly every time. The school evals we did were actually in a different district, so I could insist that we do them again, and the info that the neuropsych gave us would actually help to secure some type of services- I just don't know what would help. There are simple, in-classroom things they can do, but I think they'll do those regardless. I actually went and talked to the school counselor before we bought in this district, and she was very open to trying anything I thought would help.

Once he's in school, especially first grade, he may qualify. The teacher will get to see the extent and nuances of the issues and will most likely help advocate for services. He/she can also call the social worker to come in and observe on "bad" days. His social issues will be far more glaring as the other kids move on, and his outburst will also be further from the developmental norm. It's so tough, you don't want things to be so severe that they automatically qualify, but you also want/need the services.
I think he was really young for a neuropsychological exam - for kids with subtle issues, I don't refer out for this until they are at least 7-8 years old. Meaning, I'm glad what you have in hand will help for now, but don't be discouraged and not have a new one if a few years. Might get much more useful, practical information and suggestions at that age.
So sorry you've been through all this, but every time you post about his issues I find myself thinking how lucky he is to have such a dedicated Mama who seems to get him.

[Gena]

Another vote to see a developmental ped. Ours has been very helpful and was able to take the results from all of the other specialists plus her own tests and observations to give DS his diagnosis.

Personally, I think that a lot of your son's sound like they might be on the autism spectrum and a PDD-NOS diagnosis (if appropriate) might help a lot at school. I know you said that the specialists you've seen don't feel that he's on the spectrum, but the tests you listed don't really address ASD. The ADOS (Autism Diagnostic Observation Schedule) is generally considered the "gold standard" in testing for ASD. The GARS (Gilliam Autism Rating Scale) or the GADS (Gilliam Asperger's Disorder Scale) are also good tests to help rule in/out an ADS diagnosis.

It also sounds like you son has a lot of difficulties with pragmatic language (the social use of language). My DS does too. These types of problems often do not show up the the standard speech/language testing schools usually do to determine eligability for services. My son scores very well on many standardized language tests, despite the fact he is very echolalic, is unable to have a real conversation, and has NEVER asked a question he doesn't already know the answer to. So when DS had his re-evals for services last year (prior to entering Kindy), I requested that the SLP do the CELFP-2 (Clinical Evaluation of Language Fundamentals Preschool -2nd edition) becuase I knew that this test included a pragmatics profile. As we expected, DS scored in the average range for receptive and expressive language, but his pragmatic language score was vey low and he qualified for speech therapy based on that finding.

I suggest you ask the new school district to do their own evaluation and meet with a developmental ped as well.

[DrSally]

So, I think you said you've seen a psychologist. Have you seen a developmental psychologist for an eval? I think a good one could give you the fullest picture in terms of diagnosis and treatment plan. Like the pp said upthread, the right eval can make all the difference. I totally get what you're saying about his issues being subtle and being able to fool the evaluators who only see him for a short time. A good eval should also include an extensive parent interview and records from prev. doctors. Also, I can totally sympathize with feeling like you've been seeing so many professionals and not getting anywhere. So frustrating. The other mom's that you know who's kids have been through early heart surgeries and have similar issues, what have they done?

[DrSally]

Just in case anyone wants to glance at it, here's some info about CHD's and school and behavior problems.
http://tchin.org/resource_room/CHDSchool.htm


And here's a little blurb.
What are the best treatments for these problems, and are medical therapies safe in children with CHD?

Unfortunately, the research into the treatment of the problems I've outlined above is still in its infancy. It has been only in the past couple of years that the scope of the problems of inattention, hyperactivity, school and behavioral difficulties has been recognized. Prior to that time, there were simply not enough children old enough who survived with different forms of complex CHD for this to be fully recognized. Increasingly, physicians who care for young children with CHD are now suggesting formal developmental testing in infancy and the preschool years to identify potential problems and institute therapies such as speech therapy, occupational and physical therapy, and to recommend changes in learning environments that facilitate learning in children with different strengths and challenges.
In my opinion, there is insufficient data at the current time to comment on the safety or potential benefits of the psychotropic drugs (for example, stimulant medications for ADHD, anti-depressants, etc.) in children with CHD. Many of the psychotropic medications currently marketed for children with structurally normal hearts slightly increase the risk of rhythm problems; children with CHD are possibly at increased risk for rhythm disturbances when using these medications. It must be emphasized that no large study has determined how safe (or dangerous) these drugs are in children with CHD, or even if they work the same way as in normal children. The decision to use medications to deal with behavioral issues or ADHD must be individualized to the child, balancing the unknown risks of these medications in children with CHD against the lifelong implications of academic and social difficulties. Close follow-up with the child's cardiologist is warranted when beginning any new medication.




And FWIW, DS's cardiologist said that meds are what seems to work in his experience, and confirmed there is no evidence that using them is a great idea for these kids. That's a fun gamble, huh? :banghead:

Yes, that last statement is extremely frustrating. Who are the people doing the work on kids with CHD? Can you contact them and see if there is someone in your area--psychologist, ped, neurologist, that they would suggest for treatment?

[cuca_]

As K gets closer and closer, I'm really worried. He isn't outgrowing this. Nobody can help. He doesn't qualify for school services, but school is not going to go well for him. He can't sit still, he gets overwhelmed when around more than a couple of kids, he can't control his frustration level, and he frequently can't pay attention.

I think this is exactly why you might want to find other professionals to see, and not necessarily because you want to fix your DS. In our case I was not too worried about K, because DD had services, however, it ended up being a disaster. I'm not saying this is going to be your experience, but you do need someone who can help you navigate the system, and I don't think you've found that person yet.

A good and experienced neuropsychologist or developmental pediatrician will help you navigate the school system, or recommend people who can help you, to obtain the services you need. In addition, I would check the special ed laws and rules in your area. In our district you can present a private evaluation (I would imagine most places do) and the district has to consider it in making its decision.

Is there a parenting board specific to your area that has a special needs section. That is how I found our dev. pediatrician. I went on the board, posted questions, and read old posts. The same names kept coming up, over and over again. FWIW, the boards is youbemoms.com -- it's a spin-off of Urbanmoms.com. The special ed boards are mostly NY, although there are posters from other areas. A lot of the posters are very knowledgeable, so maybe the would know someone in your area. It is an anonymous board btw.

Good luck and hugs to you, I know how stressful this can be.

[crl]

In our district you can present a private evaluation (I would imagine most places do) and the district has to consider it in making its decision.



This is required by federal law so any district in the US has to do this.

On the note of finding someone to help navigate the special education system, there are people called advocates who can do this. They are not doctors and not lawyers (well, some of them might be, but they don't have to be). In some areas, non-profits provide them for free. Other places you have to pay.

Catherine

[JTsMom]

You all are so wonderful to take the time to post, advise, and share your stories. I really do appreciate every single post here. Thank you. :grouphug:

Because there were so many posts since I logged off, I'm not going to quote, but I took some notes, and I'm going to try to answer questions and comment here.


Developmental Ped vs. Neurologist
We have a POS, so what I need to do to see either/or is go to the ped, and talk to her some more, and see what I can talk her into as far as referrals. I do actually like this ped for most things, but she's one of those types who thinks every kid is normal, special needs are way overestimated, most kids are just acting at an age-appropriate level, etc. I've talked to others with the same experience with her. When Jason was 2ish, and we went in for his well-check, and he was running around the office, freaking out over things, and not talking, I really tried to get her to see what I meant. She finally said, "What is it you're worried about?", and I said that I didn't know, that was just it, but maybe mild ASD, or maybe something that I wasn't even aware of. She did a quicky ASD screening thingy, and basaically told me I was being a paranoid first-time mom, and that DS wasn't even close to being on the spectrum. She felt his language was about to explode, and it did at 2.5, so I relaxed a bit. Then, at his 3 yr. check, she felt it was not where it should be- which was crazy, b/c he was MUCH closer to average at that point- and suggested the speech eval.

I got her to do the neuropsych referral, but I had the cardiologist backing me up on that.

At the end up last year, we were dismissed from both OT and speech, at least temporarily. The SLP was having her baby, which definitely came into play, but she also felt Jason was only slightly behind, and that there wasn't anything more she could do for him except rec a social skills group to practice his convo skills- which is run by our OT. The OT is great. She really tries very hard to help me, and she's gone to bat for Jason on several occasions. She seems to really get him, and she listens to me, and trusts me, which is wonderful. She felt the social skills group was not at all what Jason needed, and went to the lead SLP to talk to her about other ideas. That person is.... no prize. She looked at Jason's evals and said he did not qualify for anything, our thoughts were way off, and told the OT to refer us out to a neurologist or developmental ped. The OT called our ped, explained things to her from her POV, wrote a letter, etc. The ped just said bring him in and we'll talk. So that's where we are now. I haven't called the ped b/c I wanted to figure out what I thought was the right path first, so I can argue my case.

The OT felt a dev. ped would be too similar to the neruopsych to be of much benefit, and thought the neurologist would be a better bet. I think her thought process is "let's try everything we can possibly think of, and if it works, great."

She does have a lot of "tricks", and I've tried them all. By the end of the year- heck, even a few weeks in, she knew I'd tried all of the typical stuff the rec, and that she was in over her head, but that I hadn't found anyone else to help at all, so she didn't give up. She readily admits that this is outside of her realm, but b/c everyone just kind of throws up their hands, and doesn't know what to do, she refused to give up.

The Neuropsychologist
I feel like I may have inadvertently bad-mouthed this guy. He was actually very kind, listened intently to everything we said, and seemed very thorough. We liked him- we just think the testing that was done didn't fully reveal Jason, kwim? We talked to him about that, and he suggested a behavioral psychologist. I felt that would be a total waste of time, based on what I've been told about others' experiences. The OT and I have a joke about "just do a sticker chart!" and time-outs, b/c that's the kind of thing that's been rec'd a million times, and it does no good. Seriously guys, I have a background in elementary ed and a psych degree. I know behavior modification. I've tried every tactic in the book. I've read tons of parenting books. I'm confident that Jason's issues have nothing to do with our parenting skills- not that we're perfect parents, but Super Nanny is not going to fix this kid! ;)

The neuropsych did give us an extensive report (and yes, it included stuff from the parent interview process and other specialists), and it did have school recs- many of the typical things you'd see rec'd for a kid with ADHD. I think it would be good ammo in securing an IEP, and I do think the district would work with me- I just need to know what I want before I can advocate for it, kwim? Some of those things help a bit, but I haven't found anything that will help with the major behavioral issues, except allowing Jason to walk away and calm down, or, letting him avoid these situations altogether. He almost needs me right beside him to navigate this stuff, and I can't do that for him at school.

To be continued- I'm afraid something is going to make all of this typing disappear!

[elephantmeg]

Lori, I have no personal opinions but just wanted to send you hugs. You (and all the other moms that have chimed in with their experiences) are doing an amazing job. You're an amazing mom!!!!!!!!

[egoldber]

With my PPO I can go to anybody in network without a referral, so do you really need a referral from your ped? if it were *me*, I would probably do both the ped neuro and find a developmental ped and have both evals done.

But I think that, as PP have said, it is hard at his age to tease out what is what. At his age kids are still all over the map in terms of skills and development. Things that are not clear cut at 4 are much more so at 7 or 8. But you don't want him to struggle without supports until then, so that's why getting a diagnosis that will get him some accommodations is key.

I would think that a devlopmental ped would have more experience with being able to tease out a diagnosis that will get an IEP and have better suggestions for accommodations that might help him in a school environment.


I'm confident that Jason's issues have nothing to do with our parenting skills- not that we're perfect parents, but Super Nanny is not going to fix this kid!

I get this part I really do. I am just so OVER people thinking that a behavior chart or a dollar store toy incentive is going to work wonders.

[DrSally]

I get what your saying about the various people who can do an eval. I know exactly who I would refer you to if you were in my area (unfortunately, you're not). It would be a Ph.D. child psychologist specializing in testing/evaluation (not a behavioral psych) B/c you need an eval that really captures Jason in order to get good recommendatins and something for you to really use with the school to get targeted services. Sounds like the neuropsych was closest to that type of eval, but they just didn't get a good eval. I guess if it were me and you could get it covered, I'd see about going to a developmental ped or a good child psychologist who specializes in evals. Most child psychologists who do evals are familiar with medical complications, as they're often part of the picture. Eventhough it would be redundant, technically, a different eval from a similar professional might be a better/more accurate one, KWIM?

[Gena]

With my PPO I can go to anybody in network without a referral, so do you really need a referral from your ped? if it were *me*, I would probably do both the ped neuro and find a developmental ped and have both evals done.


We have PPO and can see anyone too, but in my area the Developmental Peds will NOT see new patients without a referral. They don't care whether or not your insurance requires it; they want a referral anyway. In talking to other parents I think this is very common for DPs.

[JTsMom]

Speech, Pragmatics and CELFP- I mentioned the tests the neuropsych did, but not the others that we've had. DS has had 2 speech evals through private therapy, and more through the school system.

We've also done:
School (I only have a puny little BA in psych, but let me tell you, these were all very poorly administered. Very poorly. And again, they chalked it up to him not paying attention, which he likely was not, but that's not the whole anaswer.)
Mullen Scales of Early Development (Feb 09)- receptive language score= 34th percentile (which sounds WAY off), and expressive language score of 83 (13th percentile)

Battelle Developmental Inventory-2- 39th percentile

Preschool Evaluation Scale- Social/Emotional (25th), Adaptive Behavior Rating, Self Help (25th)= Average to Low average on all.

Private Speech
Preschool Language Scale, 8/08, auditory comprehension=5th percentile. The rest wasn't completed b/c of the psycho SLP- long story. This was also re-done.... oh, around 8/09, and he scored about average in every area. The SLP said that based on his scores, he no longer qualified for services, even though she knew there were things they could still work on. She did finish the year with him, but made no further progress.

So, long story longer, I don't think we've ever done anything that specifically addressed prgamatics. His echolalia and scripted language fools people 99% of the time b/c he uses both in appropriate ways frequently. I know they aren't his own words, but others don't. In fact, people frequently tell me how advanced he seems, and that his speech is amazingly good for his age. :ROTFLMAO:
We need someone who is specifically trianed and specialized in helping kids with conversational skills, I think. The problem is finding that person, and having that covered with our (pathetic) insurance, b/c there is no way we could swing paying for it OOP.

Diet- Good points were made- thanks. I'll definitely keep it on the table, and I'll probably PM you a bit later.

Visual Schedule and other tricks- Please, feel free to spam away. I'm very willing to try anything and everything you all can think of. We have done visual schedules, but they didn't make a huge difference. Oddly enough, that's not a real problem area for us, for some reason. I do use a LOT of visual cues, especially for behavioral isues. For example, DS's latest negative phrase (he picks different ones to get stuck on for weeks at a time, uses them for every little frustration, even when they don't make sense, and NO, we don't speak to him like this ever) is "Shut Up!" He screams it when he gets wound up or frustrated. Yeseterday, he was upset about something- honestly, I can't even remember what b/c this sort of thing happens 20+ times every day- and he was screaming it at me. I wrote down on a piece of paper, "Shut up is a mean thing to say. It hurts my feelings." and I drew a sad face. He looked at it, and stopped, and brought himself back down. Does this work every time? No way! But writing things down sometimes makes it click for him. I've also done things like make books about challenges using his photos.

I've tried adhering to a more regular schedule, challenging him more academically, doing more activities and no activities, making him his own shopping lists for errands, rewards, taking away toys, screen time, treats, etc, different types of reward schedules- immediate, delayed, etc, time-outs, Playful Parenting type stuff, Explosive Child stuff, deep pressure, heavy work, Therapeutic Listening, coaching teachers, ignoring bad behavior, being stricter, being more lax, ignoring the echolalia, reminding him that he's not using his own words, timers, more time with us, less time with us, having others talk to him, PT school, music classes, more exercise, and no screen time at all.

Things sometimes help temporarily, then have no effect after a few days. Rewards and punishments have ZERO effect. TO will work at times, if I make it less of a punishment, more of a "go re-group" thing. The more upset I get, the worse his behavior gets. I'm a very patient person- really- so that helps. Poor DH has very little patience, so things tend to escalate when he's handling them. (He tries) Humor works sometimes. If I can get DS to laugh, I can usually break his cycles. Transitions go well if I give a countdown. Giving him his way works well- I try to pick my battles very carefully, and let him have the most power I can give him. A lot of times, I can predict when we'll have trouble. Other times, it's like someone flips a switch. His behavior reminds me of a 2 yr old's a lot of the time. He can be totally irrational, make zero sense, and can't control his feelings at an age-appropriate level. This has not gotten any better, ever.



Ok, we're going to be late to music class- I'll have to finish later.

[egoldber]

Lori :hug:

I'm wondering if you have written this down, in just this way, for the ped? The list of all you have done and tried and the specific issues.


Developmental Peds will NOT see new patients without a referral

Ah, good to know. But I wonder what they do for people who are seeking a second opinion?

[JTsMom]

Shoot, I said PPO, but I meant to say POS. Sorry. Typing faster than my brain is working. And yes, they will require a refferal regardless, and most won't even accept insurance. The only way I was able to get the (several thousand dollar) neruopsych eval covered was b/c of DS's heart condition. I'm not confident I'm going to be able to get anything not deemed an urgent medical necessity covered. And although I wish we had thousands and thousands to throw at this, we just don't, and even if we did, so far, it would have done no good, kwim? I don't want to make it sound like we wouldn't find a way to pay for something like that IF we had hope that it would yield something useful, but so far, we've gotten nowhere. Hope that makes sense.

[DrSally]

Lori :hug:

I'm wondering if you have written this down, in just this way, for the ped? The list of all you have done and tried and the specific issues.



Excellent idea.

[JTsMom]

Lori :hug:

I'm wondering if you have written this down, in just this way, for the ped? The list of all you have done and tried and the specific issues.



Ah, good to know. But I wonder what they do for people who are seeking a second opinion?

I have, but not lately. I've been by-passing her. I always show up for evals, appointments, therapy, school etc. with a list. You know me- I have a big mouth. LOL

[JTsMom]

I'm really getting off the computer now. We are SO late. Thanks again guys!

[pinkmomagain]

Just wanted to address a few things you mentioned recently Lori.

I found that finding a good ST who can work on that pragmatic speech was very difficult. I can't even remember how I found ours...but at that point (prob Kindy, I think) dd2 no longer received svcs and I did have to pay her out of pocket. She was good though and really "got" that area of language that was such a problem for dd. That in combo with some social groups (she was able to get one at school without any IEP or 504) I think helped her some. Plus natural maturing. Plus prompting on my part. She's never gonna be the popular girl, but she's come leaps and bounds. A year or two ago I bought a book that helped me help her a bit. It's called: Socially ADDept: A Manual for Parents of Children with ADHD and/or Learning Disabilities, by Janet Giler. I think it's more focused on older kids, but maybe it could give you some ideas?

Also, those visual schedules, pictures to talk about emotions, etc. really helped dd2. Heck, I still use stuff like that with her if she is overly emotional. You mentioned about how it helps sometimes but it's not making a big longterm difference. I just wanted to share that as a mom of older kids, and this is true even among more typically functioning kids, the fact is, repetition -- as tiring as it is -- eventually, usually, works. Much later than we want it to, but it usually does work. So my advice is to keep plugging away using these techniques, sometimes it's hit or miss, but hopefully with consistency, it will start to sink in more permenantly.

That's all for now. So glad you've gotten so many good, BTDT repsonses in your thread!

[mommy111]

FWIW, if you want a diagnosis, I would go to the neurologist first. I've found in my experience that neurologists are really great at labelling things and may be able to get you services, although a developmental ped may be better in determining what services are needed.

[Gena]

Speech, Pragmatics and CELFP- I mentioned the tests the neuropsych did, but not the others that we've had. DS has had 2 speech evals through private therapy, and more through the school system.

We've also done:
School (I only have a puny little BA in psych, but let me tell you, these were all very poorly administered. Very poorly. And again, they chalked it up to him not paying attention, which he likely was not, but that's not the whole anaswer.)
Mullen Scales of Early Development (Feb 09)- receptive language score= 34th percentile (which sounds WAY off), and expressive language score of 83 (13th percentile)

Battelle Developmental Inventory-2- 39th percentile

Preschool Evaluation Scale- Social/Emotional (25th), Adaptive Behavior Rating, Self Help (25th)= Average to Low average on all.

Private Speech
Preschool Language Scale, 8/08, auditory comprehension=5th percentile. The rest wasn't completed b/c of the psycho SLP- long story. This was also re-done.... oh, around 8/09, and he scored about average in every area. The SLP said that based on his scores, he no longer qualified for services, even though she knew there were things they could still work on. She did finish the year with him, but made no further progress.

So, long story longer, I don't think we've ever done anything that specifically addressed prgamatics. His echolalia and scripted language fools people 99% of the time b/c he uses both in appropriate ways frequently. I know they aren't his own words, but others don't. In fact, people frequently tell me how advanced he seems, and that his speech is amazingly good for his age. :ROTFLMAO:
We need someone who is specifically trianed and specialized in helping kids with conversational skills, I think. The problem is finding that person, and having that covered with our (pathetic) insurance, b/c there is no way we could swing paying for it OOP.
.

The bolded part is just like my son and precisely why I pushed the school to do a test that includes a pragmatic profile. The other tests you listed above are great for finding simple receptive and expressive language delays, but they are not going to pick up on more sublte language problems. In particular, the PLS is useless for detecting these types of problems. The right diagnostic tool can reveal a lot of important inforamation about how a child understands and uses language.

Many schools do have SLPs who can work on conversational skills, either in one-on-one therapy or by setting up a social skills group. My DS receives both one-on-one and group speech therapy, and most of his speech goals are pragmatics. They include conversational skills like asking appropriate questions to gain information, getting someone's attention, initiating conversation, staying on topic, and retelling a story in his own words.

[DrSally]

It's called: Socially ADDept: A Manual for Parents of Children with ADHD and/or Learning Disabilities, by Janet Giler. I think it's more focused on older kids, but maybe it could give you some ideas?



That looks like a good book. I passed the suggestion on to my SIL (DN has Aspergers and ADD sx.)

[JTsMom]

Ok, we're back. Gena, how do you know so much about these tests?!? You're like an encyclopedia! :) Being able to go in and say, "I want X test" should help. It's sad that I have to find this out and tell them, as opposed to them knowing to do that test, but I'll take it!

pink- thanks for the book rec- I'll head over to Amazon in a few minutes. Also, thanks for the encouragement to keep going. It's so hard to keep at this stuff when you don't see any improvement for years. I just wish I could figure it all out and fix it for him, you know? I feel so ineffective some days. Now that he's getting older, and people are really noticing, and commenting, or giving me "the look", it's even harder. When they ask "What's wrong with him?", I can't even give a good answer. Or I get the, "Beat the ADHD out of him." types. Fun times.


Now that our new little one is on his way, and soon, I'm just worried about fitting in everyone's needs, and how the kids are going to effect each other. There are so many big things coming up. I just wish I could have figured something out before now.

I think I fit in most of what I wanted to earlier. Here are the last couple:

ASD/PDD-NOS/etc
I know that a lot of Jason's behavior are spectrumy, and that some consider ADHD to be on the spectrum, but I honestly don't think he'll ever get an ASD dx. I know that every kid with ASD is different, but it just doesn't line up, imo. I think he's missing too many pieces. He is extremely social, engages in interactive play and his language delay was never "severe enough". There seems to be a major backlash in this area though. It's like every therapist, evaluator, etc. has the "ASD is overdiagnosed" attitude, so I'm sure that colors my thinking.

Cardiac Related
I really do think this is the major piece. It matches the what the research says, the neuropsych agreed, and the cardiologist- who really, is probably the person who is going to have the most experience in that sense- strongly agrees. The other parents I've talked to all have their kids in speech and OT, and none are having much success. We all have different parenting styles, and we all have the same, or similar, issues. Nobody is having much luck. Nobody has found any real answers. It's all too new. These kids probably wouldn't have survived 25 years ago, so it's just all very new.

The neuropsych we saw works with the one the cardiologist rec'd. Unfortunately, the specific one wasn't on our insurance, but I believe he consulted.

I think that b/c of this being cardiac related, new, and un-named, we'll never have a real label- at least not in the foreseeable future. Although it's frustrating, I think I just have to let a dx go, and go with what will give him the specific skills he needs to be as successful as possible. Although his dx might not be established, the associated behaviors aren't that unusual, so I feel like we should be able to take something that helps ASD kids, OCD kids, kids with anxiety, kids with ADHD, etc. and apply it, and have it work. I just need to find the people who can do that- and maybe a developmental ped IS the missing piece there. It makes more sense than anything else at this point.

Psychologist
The only psychologist we've seen is the neuropsychologist.

Parenting Board- I haven't been able to find any active board for my area.

[pinkmomagain]

"I think that b/c of this being cardiac related, new, and un-named, we'll never have a real label- at least not in the foreseeable future. Although it's frustrating, I think I just have to let a dx go, and go with what will give him the specific skills he needs to be as successful as possible. Although his dx might not be established, the associated behaviors aren't that unusual, so I feel like we should be able to take something that helps ASD kids, OCD kids, kids with anxiety, kids with ADHD, etc. and apply it, and have it work. I just need to find the people who can do that- and maybe a developmental ped IS the missing piece there. It makes more sense than anything else at this point. "

Honestly, for right now...at his age, I think this is the right approach. But that's just my unprofessional opinion.

As for your little one on the way.....I always said that fate made dd1 come first so that she could model for dd2 and dd3 came along to also help dd2. I feel it really helped having a younger one around 1) it helped me not to hyperfocus on #2, and it forced me not to compensate so much for her and 2) it helped for her to take on a role of older sister and practice socially with someone younger.

[JTsMom]

That is like music to my ears. :) Thank you for sharing that. DS is really, really excited. He keeps talking about being a big brother, and how he wants to teach the baby things, and take him places. :heartbeat:

One of his strengths is that he is extremely loving. I think I get more hugs and kisses than any other mom in the world. :) He kisses my belly, and says, "Good morning, Baby Brother!" every day.

I do know exactly what you mean about hyperfocusing. I have a (strong) tendency to do just that, and walking away from therapy for a while has helped me relax some. Another perk is that "school" (which is really like a preschool-lite version of PMO at the Y), has changed quite a bit. His new class just started, and there are only FIVE kids, including him! So much more manageable. There is a new teacher as well, and she's really mellow. She also teaches at a local Montessori a couple times a week, and her attitude is just so much more relaxed. It's SO amazing to pick him up and hear, "Jason had a good day today! Look how nicely he's playing with the other children." as opposed to the stomachache that I'd get every day as I listened to, "Today Jason screamed in the gym, said Shut Up 43 times, wouldn't sit for story time, didn't eat lunch,........" This teacher is focusing more on the positive so far- not ignoring the challenges, but not really seeming phased by them either. It's more like, "J had a good day. He painted this picture. He loved dancing. He did have xy and z challenges- any tips for handling them? Great- I'll try that. Did I mention he shared so well and helped clean up?" Hopefully it will continue.

[JTsMom]

J Socially ADDept: A Manual for Parents of Children with ADHD and/or Learning Disabilities, by Janet Giler.


Ordered, and on the way. Thanks!

[cuca_]

I do know exactly what you mean about hyperfocusing. I have a (strong) tendency to do just that, and walking away from therapy for a while has helped me relax some. Another perk is that "school" (which is really like a preschool-lite version of PMO at the Y), has changed quite a bit. His new class just started, and there are only FIVE kids, including him! So much more manageable. There is a new teacher as well, and she's really mellow. She also teaches at a local Montessori a couple times a week, and her attitude is just so much more relaxed. It's SO amazing to pick him up and hear, "Jason had a good day today! Look how nicely he's playing with the other children." as opposed to the stomachache that I'd get every day as I listened to, "Today Jason screamed in the gym, said Shut Up 43 times, wouldn't sit for story time, didn't eat lunch,........" This teacher is focusing more on the positive so far- not ignoring the challenges, but not really seeming phased by them either. It's more like, "J had a good day. He painted this picture. He loved dancing. He did have xy and z challenges- any tips for handling them? Great- I'll try that. Did I mention he shared so well and helped clean up?" Hopefully it will continue.


This is great! I think a good/positive/nurturing teacher is so important, for all kids, and especially for kids with issues. At least in my DDs case positive reinforcement makes an enormous difference. Hearing complaints about behaviors that a kid is not able to control does nothing but affect their self esteem. I'm willing to bet that you will see a difference in your DS if the teacher continues to focus on the positive. Also, give him time (while still trying to find the right placement and support for him) -- it is amazing what the passage of time/aging does. My DD takes ADHD medication (she cannot focus in school otherwise), but she is off it on weekends and breaks, and I cannot tell you what progress has come with maturity. In fact we were away skiing a couple of weeks ago and at one point DH looked at each other and said: "She has grown up so much!" DD can still have very emotional moments, and socially is behind her peers a bit, but she is maturing nicely and progressing. Give it time, and you will see results.

Your son sounds like a very loving child, and he will be a great big brother! Good luck.