Help me decide if my daughter should be re-evaled...

[TzippityDoulah]

My 5.5 yr old has had a SPD diagnosis since 15 months. she was very delayed in communication, fine/gross motor skills and language. she has a host of other problems (walking, running, social interaction problems, sleep problems, eating/swallowing problems.... etc etc) She actually started to loose skills around six months. she stopped any eye contact/smiling and recognition of us... so we finally had her seen by a an EI team. (back then it was rare for anyone to see someone under 3 in our area so I had to push to get her seen). anyhow that diagnosis was "unofficial" as at the time the team she was seeing was headed by a great OT who said it would end up costing us a lot of money to get her "officially diagnosed" so we didn't. to be honest I was SO overwhelmed at that point in her life (she never slept and her only means of communication was 24-7 screaming) I didn't bother with getting it officially. I honestly don't even know what else they would have done. (how does one get it official?? I was told just to consider her "SPD" and that would be all she would need.) she saw and OT and behaviour therapist for a while but once she was able ot walk up stairs and reached couple of milestones they cut her out of the program. But she really continued to struggle and lag behind.

at the time i was naive and still kinda just shocked. I was young and didn't quite grasp the idea of the whole thing and I was in total denail/depression. honestly i have been ever sense. (I know that is totally lame but I'm sad to saw I was totally rocked to have a special needs kid. I just didn't expect it and it shook me. I'm actually embarrassed about how I took it) I have always thought if we found the right combination of diet/therapy/supplement she would be normal....

and then I had another son (who is 12 months) and who is presenting the same (albeit less severe). and I realize something. I've been in denial in a big way. My daughter IS doing SO much better in many ways. But she still has many social delays and eating/sleeping problems and so forth. and well the whole Autism diagnosis thing has changed so much since 5 yrs ago that I truly am thinking she would be considered "high functioning autistic" instead of "SPD". her delays and way of seeing life isn't just a SPD tantrum kinda thing.

I don't know if this is making sense. I guess what I'm saying is yesterday it just for whatever reason all hit me at once. I don't think her SPD diagnosis is completely right. something in me has always thought it was more but I was too scared and depressed to address it. and frankly I didn't know where else to go. I felt like i had nowhere to turn back then. and now? I'm wondering should I get her re-evaled? what good would it do? should I keep on just doing what we're doing with her or would it be in her best interest to seek our more professional help/therapy? Things have changed SO much in 5 yrs! I wonder if she couldn't find more help and i could find more help in better understanding her and her needs. I don't know a single othr parent of SN kids and I must admit I get so overwhlemed and depressed from always feeling I don't match up as a parent b/c she isn't at their kid's levels. I feel liek I just don't have anyone to relate to.... and I'm beginning to wonder if my daughter will start to feel that way too. maybe it would do her good to meet other SN kids her age? and maybe it would be good for me to meet other SN parents and see how they relate to their kiddos too. sometimes my brain gets fried and i fear I'm not as good a parent i should be to her.

I guess I just need some ideas. Have any of you come to a point where you weren't sure if it was worth pursuing the official diagnosis? What helped you decide? I need some fresh prospective on the cons and pros of getting her re-evaled. and what makes a diagnosis "official" b/c for the life of me I'm baffled by this one...

thanks in advance mamas!

(p.s. for the record we homeschool.... incase that changes anything)

[katsam]

My 6 year old got a SPD diagnosis at 4 and Aspergers at almost 6. Like you said I kept thinking there was something else going on. I pursued it more for school reasons, but I have also just had a sense of emotional relief in a way since we received the diagnosis. I've stopped wondering and analyzing his behavior as much. I have stopped always wondering what if. In other words it has helped me in some weird way. The evaluation we went through was pretty painless, so I would say if it would put your mind at ease go for it.

[BetsyNY]

I'd take her to see a developmental pediatrician; a school team can't diagnose autism. If you ever do decide to go the school route (or try and access services through the school), an ASD diagnosis can mean a lot more than SPD.

[TzippityDoulah]

hmmmm ok... I guess I need to figure out how to go about doing this. since getting the SPD diagnosis I've just kinda left it at that. I mean we obviously do her therapies and we stick to a certain diet and so forth, but other than what I do, we have no outside input.

part of me fears they wont see her like we do. when she's talking one on one she can be sweet and charming. her delays and quirks have more to do with social things, not one on one time. she has no issue with talking with someone one on one with no interruptions. it's the real life scenarios that cause her problems - sleeping, eating, getting dressed, playing without hurting others by mistake, lack of eye contact, constantly being in her own world, lack of listening/hearing when you are talking to her, tantrums, meltdowns.... her verbal skills were so low at 2 and 3 but once we went GFCF she now talks very well. I worry that's all they will see.

it's like taking your car to the machanic - suddenly it runs smooth when you're at the shop, then you go to the grocery store and it blows smoke and stalls.

so give me an idea - how do they go bout "testing" her? if they plan on talking to her one on one well... you know. If only I could video tape her for a day and let them review it! We work with her everyday with diet/therapies and so forth to get her where she is functioning. I almost worry someone will under diagnosis her b/c they don't see her in real life. and they don't see her within the situations that cause her the most problems.

maybe it's not even autism.... but it's something. and i really don't think it's SPD only.

[Lollybrat]

My son will be 6 next week and got a diagnosis of high functioning autism almost exactly three years ago. He had a lot of the same signs you describe. It's possible that if your daughter had been seen by a developmental ped back then, she might have gotten an ASD diagnosis.

I suggest you ask your regular doc for a referal to a developmental ped. (Most won't see new patients without a referal, even if your insurance allows it.) Some have long waiting lists for new patients (several months), so if you are leaning in that direction, you may want to pursue it sooner rather than later.

Meeting other parents with similar kids can be a HUGE help. It's been a lifeline for me. Contact your local autism group and see what activities/events they have going on. Ours has a weekly playgroup, a monthly support group, as well as various educational and family activities.

[TzippityDoulah]

Lolly,

thanks I'm glad to hear my concerns aren't crazy! I don't want to overeact... then again I dont want to undereact. you bring up a good point. I actually didn't known anything beyond the OT team we saw. there wsn't much info online. the only thign I had to go by was what I could find online which was one website. there is SO much available these days!

we don't have a PED as we do alternative medecine.... but we are moving to VA on Saturday so perhaps I will look into getting a ped there as a fresh start. (I hate to have to fight that whole "we don't vax" thing again.. grrr...)

honestly if my 3rd son wasn't showing signs like her I probably wouldn't have readdressed it. it's made me realize it needs more attention.

thanks

[Lollybrat]

Originally Posted by HennyPenny

so give me an idea - how do they go bout "testing" her? if they plan on talking to her one on one well... you know. If only I could video tape her for a day and let them review it! We work with her everyday with diet/therapies and so forth to get her where she is functioning. I almost worry someone will under diagnosis her b/c they don't see her in real life. and they don't see her within the situations that cause her the most problems.

You certainly can provide the doctor with a video tape of her behavior or social interactions. That can be vey helpful.

For my son, the diagnostic process took nearly 6 months and involved the following:

- complete physical
- blood work for genetic test and metabolic disorders
- EEG to rule out seizure disorders
- Lots of paperwork: questionairres for us, his EI therapist, and his preschool teacher
- hearing test
- speech eval
- OT eval
- phychological eval, which included both a parent interview and the ADOS (Autims Diagnostic Observation Scale).

The process was very thorough, which made us feel very confident that the final diagnosis was/is correct.

[nayma]

i totally understand your concerns. when my dd was evaluated, i was *sure* they wouldn't see they things i did everyday. and sure enough, the first eval she was pretty on-point (or so i thought. turns out they were still able to see certain red flags). for the second eval, though, i didn't prep her about what would happen, what we were doing, etc., and the eval was horrible - i.e., she melted down hugely, stripped off her clothes, bit me, etc. i felt so bad that she went through this, but it gave the second evaluator a broader picture of her.... the other thing that really helped was writing things down. i took lists into each eval with behaviors she displayed that i found quirky, concerning, etc. they really listened, and took what i said as part of the picture, as well.
i would absolutely videotape her. that's a great way to show others a snapshot of her behaviors, tendencies, etc. i saw a great quote the other day that basically said, if you put an asperger's kid in a room alone with their toys, they no longer have asperger's - i.e., all the things that are "problems" in the outside world suddenly disappear, if there is no socializing and coping involved.
aaaack! wakeful child . good luck, mama!!

[Linda on the move]

Originally Posted by HennyPenny

part of me fears they wont see her like we do. when she's talking one on one she can be sweet and charming. her delays and quirks have more to do with social things, not one on one time. she has no issue with talking with someone one on one with no interruptions. it's the real life scenarios that cause her problems .

It's more common than you think!

For my DD's neuro-psych eval, she was seen one-on-one for a day and half and had more tests than I can list. In addition, the doctor took input from me, input from the school, and had me fill out MANY questionaires (most of them had different questions that I had to rate my dd on a scale of 1 to 5). It took me 4 hours to fill out all the questionairs and the medical history.

Before the eval, I typed up a very organized list (I kept it to two pages) of what I saw as the major concerns. I kept emotion out of it and justed listed my factual concerns. The dr. said it was very helpful and clear.

The whole "does fine one-on-one but cannot deal with a group of peers" is actually diagnostic!

As far as when to go for an official eval, I think it's when they need something that the eval could get them -- like accomodations at school or therapy, or when you just feel really stuck as the parent and need some feedback. Understanding my DD more makes it easier for me to make her life work for her, and then she is happy. When she is happy, I can be happy.

I'm OK with having a child with high functioning autism, as long as her life basically works FOR HER.

[BetsyNY]

My son has PDD, which is on the ASD spectrum. Many of his evaluations had a parent component--I was given a checklist or other instrument to fill out as part of his evaluation. These doctors understand that they're just seeing this kid for an hour or so, and it's impossible to get a complete picture based on that. Parent observations/anecdotes count for a lot.

I know it's hard, but one thing I'd say moving forward is this--say you go to a specialist, and you leave the office with an ASD diagnosis. SO many of us here have been through this, believe me, and the one thing that stands out to me is this: you've still got the same kid. You see the behaviors, you see how she struggles. The diagnosis doesn't change any of that. It's just another piece of information which may help you help her.

[TzippityDoulah]

This has given me a lot to think of. I have no insurance and I don't believe we qualify for state in VA... and we are strapped (special foods and clothing for her cost a LOT of money!). How does one go about doing this on a shoe string budget with no insurance?

Thanks to all of you. this is immeasurably helpful just hear your thoughts and experiences!

LINDA ON THE MOVE: thanks for your post. very helpful! I felt like I needed to clarify (incase I gave the wrong impression). she isn't anti-social at all. and given the right situation with peers she would do perfectly well. She loves other kids especially older ones. she LOVES new experiences (as odd as that is) and meeting new kids, it's the day to day that throws her off. (getting dressed, eating, shopping, any type of car activity, she has trouble walking and has poor leg muscle tone. other various concerns that are too much too type) what it does mean I don't know. she simply does not function under any type of pressure or expectations whatsoever. so long as it's play she is totally fine. beyond that it's like out of her ability to relate to. if she starts a conversation it could go quite lovely - but she can't handle one started from you. she plasy quite well with herself, but she has trouble with tasks and follow through. often says "I didn't hear you" even when you're looking at her and talking. she does make eye contact - but only on her terms when the mood strikes. you can't generally just go up to her and have a conversation or she will be oblivious to your want to talk to her. she'll walk away mid sentence or spin in circles or over talk you and so forth. it's like she just can't understand expectations whatsoever. even the subtle ones that most people take for granted. and it waxes and wanes. there are days where she is SO on. like she hasn't an issue in the world. then there are days where you can hardly get her to converse with you and she cries all day and spins and hits....



I try to cater the world to her needs as much as I can. but the older and bigger she gets the more difficult I find it. She simply isn't outgrowing any of it. she's growing up for sure, but not outgrowing it. I don't know how to make the world cater to her needs like we do. and i've having trouble moving beyond this point. I feel as if I have done all I can her that I know how, but it's clear she has some trials ahead. I sometimes feel under-equipped and like I'm not cut out for such a responsibility (though I totally want to learn how to be!! she's my precious little girl and I simply adore her.)

anyhow I am TOTALLY babbling. thanks for listening. I'm just working things out and like I said your feed back is SO helpful! this is a wonderful forum!

[TzippityDoulah]

Originally Posted by Lollybrat

You certainly can provide the doctor with a video tape of her behavior or social interactions. That can be vey helpful.

For my son, the diagnostic process took nearly 6 months and involved the following:

- complete physical
- blood work for genetic test and metabolic disorders
- EEG to rule out seizure disorders
- Lots of paperwork: questionairres for us, his EI therapist, and his preschool teacher
- hearing test
- speech eval
- OT eval
- phychological eval, which included both a parent interview and the ADOS (Autims Diagnostic Observation Scale).

The process was very thorough, which made us feel very confident that the final diagnosis was/is correct.

this is very useful info! thank you! I wasn't sure what to expect! at the othee eval she had at 15 months it was like a few people seeing how she interacted with them for about an hr or less. I just felt liek though they were nice and understanding, they totally didn't get it. she was all charming and smiles b/c they were engaging her and she was feeling confident you know? I mean some things were obvious (like her not being able to say anything at all) but other things they would never have seen during that eval that were far more concerning to me than lack of words.

[Linda on the move]

Originally Posted by HennyPenny

How does one go about doing this on a shoe string budget with no insurance?

Request an eval from your local school. You need to make the request in writing. (a proper letter on real paper with a date). This is the path even if you child isn't currently enrolled in school -- it's how our society does this.

I try to cater the world to her needs as much as I can. but the older and bigger she gets the more difficult I find it. She simply isn't outgrowing any of it.

some special needs (such as aspergers, processing disorder, etc) can't be dx'ed until the kids are a little older because the behavoirs are normal for younger kids, but most kids outgrow them. The demands on child to bend themselves to the outside world become greater as kids get older.

she's growing up for sure, but not outgrowing it.

I find that to be one of the worst feelings, that my DD's body is growing up but that she really isn't.

I sometimes feel under-equipped and like I'm not cut out for such a responsibility

I feel this way every single day.