Ivy is finally diagnosed!

[Nature]

First of all, I want to thank each and every single one of you for being here in this forum, in this thread. This has been a place for me to read, commiserate and share my feelings for years. I have always been thankful to have such a great group of people that I can count on to tell it to me straight, and be there for me. Its because of YOUR encouragement that my daughter and I were diagnosed with Asperger's Disorder. Its because of you, that she is finally going to be getting help!

For those of you who have been following along the past five years, you know how hard we've worked for this!

Since the beginning of the year we've been having evaluations done by a neuropsychologist, and a speech and language pathologist. I disagreed with the school district that there wasn't anything there and sought an outside evaluation. Because her behavior is starting to increase at school (detentions, lunch in the office, no recess, written up, lost bus privileges, lost recess,etc...) they were not even considering dropping her IEP for next year. And they were very interested in hearing what she ended up being diagnosed with.

I haven't relieved teh official paperwork in the mail, but I met with her for the parent feedback session and her diagnosis's are.. (drum roll please)

Asperger's Disorder
Anxiety Disorder
ADHD
Cognitive Disorder

She scored low in her working memory, and insanely high in her processing speed. Her facial recognition is wonderful, so thats a definite strength. She said the exact same thing, one side of her brain isn't functioning in the way it should be. Her word recall issues, are the same ones I have. Her memory issues.. ditto. We share the Asperger's and the Anxiety Disorder. And daddy has ADHD.

The Anxiety disorder I didn't recognise and the Cognitive disorder blew me away. I guess its nothing to do with her IQ (it was 112) but more to do with her memory and word recall issues. Her inability to remember more than a 1 step command.

She also scored low in her adaptive functioning. Which is her ability to do the things to take care of herself and her environment. Brushing teeth, setting the table, etc..

So, we talked about medication and I think its something we might try. It helped my husband so much, that it would feel wrong to at least not try it. So theres a psychiatrist I have to call. And she is referring us to Spurwink to speak with the autism specialist and get a case manager so she can help us coordinate care.

The neuropsyc still wants additional pragmatic testing done because she wasn't happy with the first one. It wasn't big enough I guess. And she also wants her to have an OT evaluation done to see if she has Sensory Integration Disorder as well.

She also did mention that if the ADHD didn't respond to medication, then it was more likely she also has a mood disorder as well... but they're going to wait on that dx until they can know for sure.

She would like to see her in horseback riding, social skills group outside of school and summer camp.. and really wants me to call and get those services going. I'm feeling pretty good about it!

She also said to call another IEP with the school and have them change her classification from speech and language disorder to autism, and that they need to bring back her OT, continue with the social skills group, and give more accommodations for the ADHD.

So now my question is, we are a low income family (dh and I are both on SSDI/SSI) Does she now qualify for SSI? Should I just go down to the office and talk to them?

I never did get a bracelet before (a made one, or medic alert, etc) should I? She has gotten lost before. She does lose it and turns into a crying mess.

Anyway... you know, on the way back from the appointment. (hubby stayed with the other kids) ... I thought I'd feel elated! On top of the world! I finally got her dx! I told them! I knew it! ... but i found myself both laughing hysterically, and then bawling my eyes out, then laughing, then crying.... all the way home. I do believe I was certifiable at that moment. LOL Everyone says how hard it is when its finally REAL,, and I didn't think I'd experience it. Because its been so long that I gave up having it be "official." I knew she was autistic, dh knew, family knew, she knew, ... it was no surprise. ... But somehow it still was really hard. Far harder than I imagined. I turned into a recluse for a few days, which is why I didn't post sooner.Her official dx day was June 16, 2010.

I feel like I'm at the beginning again. Even though I know all there is to know about it I guess... I feel this need to connect with others that have BTDT.

So..... YAY! Ivy was officially diagnosed!!!!! We're making headway! FINALLY!
:t humb:lov e:ballo ons:autis m

[ericswifey27]

It was not that long ago I was in your shoes. It was such a relief to have validation for what I knew.

I am glad you can move forward with continued help therapy etc.

[sbgrace]

Wow! I'm so glad you finally got names and accurate ones at that it sounds like! Yay!

[Kristine233]

What a relief! I know there are people who are horrified when they get a diagnosis of any ASD spectrum things but you sound like me, RELIEVED to have an answer! Its nice to finally have a name and feel validated. Finally have something tangible to work with and research. So congrats! Hopefully this will help you get the different services and access to resources that will help your family!

[logan&jordansmommy]

For SSI you have to apply to see if you qualify. They have to do an assessment (sometimes just over the phone, sometimes in person by a dr) to see if your child meets the "criteria".

[DaughterOfKali]

It's a relief to find out your suspicions were correct, isn't it?

[Nature]

It is such a relief to finally have a diagnosis. And not just "any" diagnosis, but the one I thought was correct since my gut first started having that "this isn't normal" feeling. (and yes, normal isn't what I really mean. I hope you all know that. Its the only way of describing that she didn't fit into the box of what I believed a baby/toddler/preschooler/gradeschooler should be doing)

She's been different since birth. She slept very little. Stayed up until 2am, and still got up at 5am. She just seemed to not even need any at all. We started using a super low dose of melatonin when she was 2, to help her relax enough to fall asleep. Though we take breaks here and there, and have on several occassions gave trial runs to see if she can fall asleep easily without it.. and its failed. At one point she was on a higher dose, but it cased night wakings and nightmares... so she went back down to a lower dose. Today she only takes .5 (a 1 mg chewable cut in half) and its the perfect dose for her.

I have a few Youtube videos up that have Ivy talking to me. Those were taken when she was 4 years old. The quality isn't super awesome, but they give you a picture of her constant movements, her odd eye contact, and some of her conversation skills.

Now that she has official diagnosis's, I'll be compiling a video montage to help other parents. I know that Youtube and this forum (and also Wrongplanet) are what kept me alive. Connecting with other people. And I spent so many hours researching what girls on the spectrum look like. What do they do? Behaviors? Odd things? What types of stimming do they do? Even ADHD, there are not many videos out there showing behaviors. Sure, we all know what ADHD is. It was the catch all dx years ago, before Asperger's became the newest fad, as the medical world likes to tell me. But what does it actually LOOK like in a girl? Words are different than video. I wanted to see videos of other girls my daughters age. I wanted to compare. To find some sort of common or not common ground. I craved it so much! And yes, my diagnosis is primarily the driving force behind my research (since thats one of my special interests. lol) But I am confident that people want and need more videos just so they don't feel alone. They can finally see some and say, "THAT right there! THATS what my daughter does!! OMG!"

So look for some new videos on my channel soon.

http://www.youtube.com/user/witchymama2

Regarding SSDI/SSI ... my husband and I both get SSDI, I also get SSI. We get TANF and food stamps as well. I know we still fall below the poverty line. And since it took me quite a few tries, I know they like to turn you down for SSDI. But I'm just wondering how the process works for a kid. I do not have enough work history credits to sustain myself on my SSDI alone, its too low. Thats why I get SSI. Its to bring up my monthly income a bit.

Does anyone know if they count your SSDI/SSI/TANF income against a child applying for SSDI/SSI? If thats our only income (which it is) would they count that? They can't possibly deny us for making too much money if we're still below the poverty line right? It would just be denying for the reasons..? I know I could pick up the phone and call them, I just really hate the telephone.

[cchrissyy]

that's good to know! I was happy/releived too. It's good to have documented answers, direction, and access to services!

[logan&jordansmommy]

I don't know if they count that income against you but I would think they would. But if you are still below the poverty level I don't see why you wouldn't qualify income wise.

Honestly, when I asked around about SSI and income etc I got so many different answers from friends that have talked to SSI. So I decided just to apply instead of wondering if that makes sense. You can go online (don't have the address off hand) and fill out an online app. Then you call to make an appt. That way they have a lot of info to start with.

Good luck!

[Nature]

Thats what I'm finding online too! One post says, "Oh you'll get it easily! They approve kids." and another says, "Fat change getting it for THAT." Ugh. Even among family members the answer is different!

I know that both my dh and I had to fight to get our SSDI, but that in the end we both were able to get it. Partly because we didn't back down and kept applying. I know some people give up, and the government knows that too. Thats why they reject so many people the first few times. They've found out how to save money! lol

I've noticed that since Ivy's official diagnosis, my anxiety has lessoned some. Not enough that I'm anxiety free with every day issues, but its almost like I was waiting for the other shoe to drop for so many years. I knew that eventually she would have behavior problems. And I didn't want her labeled that way, when what she really needed was help. Our extended family has a lot of history of kids with behavior issues, because their primary issue was never seen and dealt with until it was nearly too late. I didn't want that for my children, so my mission for the past 5 years (when she was 2 is when I was SURE that things were not "normal" and yes, I hate using that word because its not how I feel about it, but.. I can't think of the word I want to say.)

Family told me she was fine and that all kids act that way. I described it as feeling as though there was a disconnect there when I talked to her. Like she wasn't engaged as she should be. A bit flighty. Too loud. Too in your face. Too figidity. Lately, too defiant and aggressive. And what we call to sum it up in our house, "Too much Ivy."

I almost felt like I was trying to convince people of what I was seeing. And its hard not to feel attacked when others don't see it. Of course, over this past year... others saw it. Suddenly the school didn't mind keeping her IEP. Relatives understood when I said we were having a bad "Ivy day."
I can't really say that it made me feel better that others were seeing what I was seeing. But having the neuropsych see what I was seeing, and give it a name. To have her exactly pinpoint behaviors that I saw without me telling her, was such a huge relief I can't even describe it accurately. Suddenly I can stop trying to prove she needs help like I was before. (at least the feeling that I'm alone is gone)

I know it won't be an easy road still, but I know the reality of what the road would have looked like without the acknowledgment that we needed help.