We got the written report and evaluation yesterday from Easter Seals. *Sigh* I nearly had a heart attack. The "soft signs" are more pronounced, according to the OT, than I first thought. She, evidently saw more resistance to midline crossing than I thought, and she had more issues with movement, (hypotonicity and hyperflexation ect) on the Swing and Therapy ball, than I knew. The thing that really scared me was the "Official Diagnosis." It was at the top of the Report. Childhood Disintegrative Disorder, Active. I started crying, because I KNOW Sage is not "disintegrating." She does lose foods and doesn't go back to them, AND she basically refused to speak in sentences to the OT, but she is she around strangers and she thought that, for some reason, despite our promises, someone was going to try to "make" her eat food that she didn't like. The OT did include "the findings, especially verbal ones, in this report may not be accurate..." and then listed why. So, as soon as I could stop crying, I called and asked to talk to her (praying that she hadn't had her baby over the last two weeks and would be gone) she called me back right away and clarified that the "Diagnosis" had been given by the Doctor's Offfice (by a nurse, not even the Ped) in order to get Insurance Reimbursement. It is a "catch all" diagnosis for kids with Sensory Processing Issues. She clarified that she was pretty sure Sage is not "Autistic" or "Disintegrating." (CDD is a very GRIM diagnosis, as children continue to lose skills for years, until they are mainly non verbal and nearly nonfunctional.) The DSM has to change these codes. Is Sage going to be classified "CDD" or "hopelessly autistic" her entire life? Anyone who meets her, and she talks to knows she make eye contact, (although a lot of kids with Autism do, too.) but her "Cognative and Intellectual Functioning" was above normal, which is contrary to CDD diagnosis. She is a highly verbal child, who talks, in a nearly adult manner, if she is comfortable. Most people who know her would never say "Something isn't quite right here." I KNOW she has some serious Sensory Issues, but that diagnosis just threw me for a loop. Considerng she has lost NO verbal, physical or social skills since she learned them as an infant. I have to keep telling myself that the nurse just kind of grabbed this diagnosis out of his butt, as Sensory Integration Disorder doesn't HAVE a diagnostic code. The only other thing they could have put was "eating disorder" or "pica" neither of which are accuarat at all. These codes are not fair to kids with full blown autism, they aren't fair to children with SND, they make more work for the therapists, the doctors and give parents who do their homework anxiety attacks. *sigh* I want to go on about the Auditory Processing Program they want to enlist Sage in, but as it is not "proven" we don't know if it is covered at all. And the equipment alone is quite expensive. ($200.00 earphones, an advanced CD player and some other stuff, not including the therapy for this issue.) We were mainly concerned with the texture and food issues, and that, eventually will be addressed AND covered by insurance. I am wondering, as they are kind of pushing this Auditory Program, if they are maybe doing research and trying to enlist as many kids as possible. I am so freakin confused.............:banghead:
Thank you. Back atcha! The thing is, we went through (and are still) hell with Sunshine and the Tourette's ADHD. (Lennon's mild ADHD and Moon's ADD were really not a huge challenge for us.) It nearly tore Bear and I apart. They know more about these issues than they did 11 year ago, when Sunshine was diagnosed, but I am so scared for what I KNOW we will go through. Yes, Sunshine and Sage are different kids, but sometimes Bear will see Sage freaking out about something and go "Man, she reminds me of Sun at that age." and I want to cry more.....
But, maybe Sage does that because she's seen Sun do things like that? Could that be possible? Wow mama, you sure are a strong woman, you have gone through and are going through so much! I wish I could give you a real hug.
You could well be quite right about that. She idolizes her oldest sister, and Sun still has meltdowns (despite years of therapy, meds ect, although not nearly like they were years ago) and Sage could well think that is the way you act. I tend to freak out on occasions, but in a really different way. (I get pretty pathetic, actually. ) Thank you for the hugs, I appreciate it so much. (((((((hcm)))))) Love ya. Bear and I held each other all night last night. Of course, I had to make his read the ENTIRE evaluation. I gave it to him and told him we could look anything up he didn't understand. He comes out of the bathroom, like, 4 minutes later and hands it back to me. I KNOW I can read faster than he does, the thing was 25 pages! I asked him if he read it all, and he said, "Yeah, but only the first page was about Sage...." ARUGHGHGG. No, Bear, the WHOLE things was about her. So, he went back in (why the bathroom...? Dude stuff, I guess.) and came out, a while later, quite subdued. We'll get through it, it could be worse. We just KNOW how hard it's gonna be. I apprecaite your help, HCM.
((((((((((Hugs to you and yours)))))))))) Is there another specialist you can see? That may give you a different diagnosis? You're a strong woman, and you seem to have a strong husband and children....I'm sure you'll all pull through this no matter what.
((((((Maggie)))))) If you want the treatment available through the schools, you have to have a diagnosis. You could skip all that, find an OT on your own, but it would just be way expensive. You know good and well that the label doesn't change who your child is, it only changes what programs she is eligible for. So ignore the paper, watch the child (kinda like breastfeeding, you know). If the program helps, who cares what dx they give her? If the program doesn't help, or makes things worse, pull her out of there. You might find it more effective to find a DAN! doctor near you. As soon as Meriel weans (can't detox or do chelation until then), I'm going to see one in a nearby town (for me, not for the kids). But Maggie, you know your children better than anyone else does. If someone calls you "dirty hippie" does that change who you are? Does that label follow you everywhere you go? Nah, I doubt you allow such things to impact your life much, do you? It's just a word on a piece of paper. Don't let it hurt your child.
This is why I am so reluctant to get Xander evaluated, I know his behaviour with strangers is extremely shy and doesn't reflect his behaviour in a relaxed and comfortable situation where he feels safe. I think they'd find him worse than he really is.
I appreciate it, sweetie. I did find these OTs on my own. The school doesn't even refer for it. I got a bunch of OTs from Bear's Insurance, and Easter Seals were the only ones who were close enough to consider (yeah, I know, but I KNOW myself, and if it it too far, I just won't make it to the appointments,) and many of the OTs on the paper Bear gave me didn't do kids, or ONLY did kids with severe "pervasive" disorders, when they heard Sage could talk and read, they couldn't see her, and many of them did only hands or legs ect. Easter Seals is about teh only place we can go. Also, the dx was not given by Easter Seals, they only use the dx the doctor gives them, and there isn't a billable dx for SND, only general "Autism Spectrum" diagnosis. What is a DAN doctor? I'll have to look into that. I am just thankful that our Ped even recognizes SND, a lot of doctors don't even "beleive" in SND. At least Kathy (my ped) recognized the issue, and was sensitive in discussing it with me. And, she didn't even do the dx, she wrote "Sensory Integration Disorder" and that, sadly, isn't a billable diagnosis, so the nurse had that, and "Eating Disorder" to pick from. *sigh* Yeah, I'll just take the dx with a grain of salt, Hell, maybe it'll be easier to get Sage a 504 Plan, when that time comes...... (making lemonade out of lemons.)
((((((hugs!!!)))))) Still waiting to schedule a screening with our OT but it sounds like you've got quite the "lovely" doctor-soup yourself. I keep telling myself "we only needed that title so we could get help." Somehow looking at it that way helps me a LOT! Food issues - ugh. ((((((hugs!!!)))))) If you don't mind my asking, what's a 504-plan? love, mom
mags, it sounds like the diagnosis is to help with payment. I have a seizure disorder that is NOT covered by new insurance if it is listed as "epilepsy," but is if it is "seizure disorder." no matter what treatment or none, I'm willing to do. go fig. freaking medical money mafia. so my NP has it listed as the more likely to be covered term. (another doc did the opposite, so who's to know?)
I don't want to high-jack this thread but, I have some issues that I deal with and I wonder if it could be similar to what Sage has? I'm not so much OVER sensitive as UNDER sensitive. Or it flip flops, is that possible? I guess I could IM whoever is interested in listening what I'm talking about.
I think you are right, Druminmama. Without insurance, treating her would be very difficult (the evaluation alone costs $650.00) so, we have to go with what we can get, to get coverage. Jayzz, SND is very complicated and has many forms. Yes, one of them is understimulation. I'd read "Too loud, Too Bright, Too Fast, Too Tight" or any of the other books mamaboogie and I suggested on the "Autism" thread. A 504 Plan is a school plan which requires "accomedations" for children who have issues that may need some special care, but are not, due to, usually higher IQ or good school performance, eligible for an IEP (Individualized Education Plan.) If you are homeschooling, it won't pertain to your kids. Although in some states, children who need IEPs (usually those with more severe issues and who need help beyond what a regular teacher or parent/teacher can provide) can get them while homeschooling, but not all states offer this. I know 504s are for in classroom/lunchroom/playground only, so they wouldn't be useful to homeschooled kids.
Terrapin, a good evaluator will KNOW that many children need more than just one interview. The Evaluator Sage had made it clear in her report that "some of Sage's responses are not typical of her actual behavior or her abilites. More time needs to be spent with her to get more detailed and accurate information." Please, don't deny your child if he needs help out of this fear. A freind of mine did this, and her son is now beyond help, she was so worried about him "getting into the 'system'" that now he has become violent, due to frustration, and is in a WORSE "system" than he would have been if she had had him evaluated, and diagnosed and properly treated and therapied when he was under 8 or 10.
thanks for the info,Maggie. I know I need to start facing this stuff head on, I just have so little support.
It's hard. Parents of people my age, and even your age and younger, often don't want to give the support, as they think if they "ignore" the situaiton it will just go away. Or they have the idea that "those doctors will just find something." Neither is true. My dh and I and our kids all have neuro issues. My dh and I got virtually NO help as kids, (my dh saw "a man" heaven knows who he was, who told my inlaws that his "twitching" was "voluntary" and gave him some stupid ways to "stop it." Then told my inlaws that their strict discipline had "caused this." (He had Tourette's Syndrome, it is NOT voluntary, and although my FIL's nasty ways and lack of empathy towards any human being on the planet, including his own children probably aggravated the TS, it didn't "cause" it.) We learned, after waiting too long to get help for our oldest, that getting help is really the best thing for the child AND the entire family. So many familes destruct due to neurological, emotional or medical issues which aren't addressed. When Sunshine was first diagnosed, my dh was furious. He still had his parent's idea that one should just ignore problems and leave them alone, so I had basically NO support (and my father thought and still thinks that EVERY single health issue is due to "pesticides and fragrances" so he wasn't much help either.) I had to deal with Sunshine while teaching my dh that there is nothing "weak" about getting help when one needs it. He eventualy came around. Things got easier when he did, but for about a year, I was basically alone helping my child, taking her to therapy ect. My dh had no problem with subsequent children, and he knows that the problems of NOT treating these conditions are a lot worse than getting help. Is there ANYONE in your life you can get some support from? Even if there isn't (like I didn't have at first, either) DO IT. Sometimes only Mama knows what is best for a child, and we have to be strong mamas to be alone and walk AHEAD of everyone else, because we know it is what is best for our children. Good luck. I know you can do it. Even if you have to start it alone.
