What a long strange trip it's been...

and it's not over yet! Still in the midst of everything here. My son has been diagnosed with Sensory Processing Disorder as well, and of course his presents opposite of his sisters so that they can feed off each other and drive me even crazier. Waiting to get his therapy started. We'll likely be looking at speech therapy for him again too.
Despite the recommendation of every expert who has dealt with my daughter, the school continues to refuse evaluation. I really should be looking into how to battle them, but I just can't find the energy. I know they are breaking the law by refusing my request for evaluation, but I just don't know if I'm ready to fight that battle on my own.
I'm beat. Seriously, this has all take such a toll on me, I don't recognize myself anymore. I'm so angry all the time, and when I'm not angry, I'm crying. I can't take the constant fighting, crying, screaming, anger, etc, etc from these kids. There is rarely a moment of peace and quiet in this house unless they are both sleeping. My almost 4 year old will not stop jumping and climbing on everyone and everything, he still puts everything in his mouth and bounces off the walls all day long like his sister does. My daughter suddenly hates school and never wants to go, but they tell me how great she does all day. At home, she's like a bomb ready to explode and you never know what will light the very short fuse. She alternates between that and crying that she just wants to be with me all the time, as if she were a 2 year old with separation anxiety.
People keep telling me that God doesn't give you more than you can handle, but I'm thinking God got it wrong with me. No one should have to handle this much crap by themselves. I trust in God, but how can I continue to believe He has a plan in place when no one can give me any answers to my questions, still, and no one can advise me on how to make things better for my family. I can't grin and bear it any more. It's killing me.

It's been rough

Lots going on, many visits to doctors, therapists, trying to work with the school, participated in an Autism walk, incorrectly learned the brushing technique and possibly caused the multiple lengthy meltdowns my daughter had yesterday.
In the meantime, I've just been really desperate for support. I was so lucky to find a Facebook page with wonderful people on it, where I can go and talk, vent, learn, whatever. But it sure would be nice to actually be surrounded by a support group. With the exception of a couple of people, I feel like I literally have to beg for some support and/or understanding, and I still don't generally get it. It's discouraging, depressing, and it takes a toll on a gal. Hubby has been out of town a lot and dealing with everything by myself, 24 hours a day, is wearing me down. I haven't been at this low of a point in my depression for as long as I can remember and that scares me. Obviously, I will do what I have to do and that is keep truckin' along and do what is best for my family.

Aspergirl

Sounds like a superhero name doesn't it? Well, it is. My daughter has officially been diagnosed with Asperger's and she is definitely a superhero. I will admit to being a bit overwhelmed, despite knowing that this was coming. Despite thinking I was, I actually wasn't truly prepared for everything involved in this. I've spent countless hours (days, weeks, months) researching it all, and the past 2 days have been spent fine-tuning a letter to the school requesting an IEP evaluation. Considering her teacher thinks she's a model student because she is super smart, reads well above her level, always brings in her homework, and doesn't cause any disruptions, I imagine the school is going to fight me on this. What they don't see is the extreme meltdowns and anger at home, especially after maintaining control all day in school. They don't see her telling me that she just spends recess by herself because no one wants to play with her. The don't see the hours we sometimes spend on a single homework sheet that should not take more than 5 or 10 minutes, because the instant she doesn't know exactly what to do, she shuts down, often screaming, and it takes a very long time before she is able to focus enough to attempt the problem again. They don't see how she acts differently from the other kids in a group. The other kids will be playing together and she will be off pouting by herself, telling you when asked that the other kids are mad at her and won't let her play, when really she is the one who is distancing herself and refusing to be part of the group. They don't see how my heart breaks when this happens, and how her heart is going to break when she starts to realize that she is not being included in everything the neighbor kids all do together.
They don't see that she is clearly fighting a battle every day and that I will do everything in my power to make sure she wins.

My name is *********... and my daughter is autistic.

I'm practicing. Finished up what should be the last of the testing today... now we are just awaiting the final results. Our psychologist did verify for me today that we are looking at either pdd-nos or Asperger's. My daughter is definitely on the Spectrum, we're just not sure precisely where. She is high functioning, but we definitely need some help dealing with all of this. This is not going away and we all need to learn how to deal with this so that we can be sure we are doing what is best for our family.

Aspergirls

Let me start with an apology, as it has been quite some time since I wrote anything here. We've just been truckin' along, doing the same things. Mainly trying to get things figured out with my daughter. She has been diagnosed ADHD, and we have been seeing a really good specialist regarding the possible Asperger's or pdd-nos. We're very happy so far with how thorough he has been, as well as his commitment to finding all the pieces of this puzzle so we can get some answers, and therefore some help!

So, based on the direction things are heading, I finally ordered a book that has been sitting on my wish list for months. It's called "Aspergirls: Empowering Females with Asperger Syndrome" and I must say that I am already impressed and I'm only on page 14! I have been wanting a book that would talk about the specifics of Asperger's in girls versus boys, because most studies and books are about boys. Considering this is still considered to be a primarily male disorder and there is a definite lack of studies done on females, I'm very excited to learn more about the elusive Aspie girl.

GADS

Is anyone familiar with the Gilliam Aspergers Disorder Scale? We completed both the GARS and the GADS for my daughter. She tested as being clearly not autistic on the GARS, but she ended up in about the 16th percentile on the GADS which the psychologist said is concerning. It doesn't mean she is definitely Asperger's, he said, but that more testing is needed to determine whether or not she is.

Does anyone have any insight on the GADS and what the results mean, as well as maybe what other tests we can expect to help verify or rule our Asperger's?

Thank you!

Second verse, same as the first.

We saw a psychiatrist Thursday. Based on what he has read about our case, heard from our psychologist, what he has learned from me, and what he saw for himself at the appointment, he agrees that we are likely looking at pdd-nos. He opted to keep her at the 10mg dose of Strattera instead of increasing it because she is so small, and has already had trouble with the side effects. We also switched to giving it to her at night. He was able to clearly see the eye tic and mentioned Tourette's as well.

We received a referral to yet another psychologist at a different clinic and I wasn't going to make an appointment because I didn't see the point in seeing another psychologist... but when the lady called me about my paperwork and I told her that, she responded that our PCM specifically requested we see this doctor so that we can get a diagnosis in our records and start on a treatment program. So I figured it can't hurt to get another opinion, especially if this doctor is more willing to put it in writing.

So, that appointment is Thursday at 3. It could (and likely will) take more than one visit to pinpoint the problem. They are also recommending ABA (Applied Behavioral Analysis) if they agree with the pdd-nos diagnosis. I'm not sure how I feel about that yet, I have to research it more. Plus it may take a while to jump through all the hoops with our insurance to get the extra benefits for special needs.

Tic Tac Toe

Well, really only tic. We went to the doctor today and had her evaluated for the eye blinking thing. The doc said it is definitely a tic and is just another piece that will help complete our puzzle. He mentioned Tourette's, which I have read sometimes goes along with autism. Let's hope it doesn't progress into what most people think Tourette's is!
The main reason we went in is because our psychologist and our PCM finally managed to actually speak to each other. They agree with an ADHD diagnosis for now and a medication trial to "take the edge off" so that the underlying problems will hopefully become easier to decipher.
The doc is putting her on Straterra, which he said is not usually his first choice, but because some of the other ADHD meds can cause or exacerbate tics this one should be better for her because it is sometimes prescribed to help with tics.
Obviously we will be starting at a very low dose. 10mg for a week, then 18mg if she tolerates it well.
I'll keep you all posted!

Is this a "tic"?

A couple of weeks ago we noticed our daughter was blinking her eyes a lot, like squinting rapidly. It lasted for almost a week. We thought maybe it was a nervous tic, or possibly something as simple as allergies. It went away, we didn't think much more about it.
She's doing it again. I noticed it last night. Is this something that could be part of the PDD-NOS? She's not having headaches or vision trouble or anything. She actually just had her eyes checked at school 2 weeks ago.

Anyone know anything about this?

Chidren's Hospital, here we come!

Apparently despite the psychologist telling me that the pdd-nos diagnosis was firm, the letter he sent to our PCM didn't say anything about pdd-nos. Instead it mentioned a whole bunch of confusing things, as if the psychologist still hadn't made up his mind.

Based on what the psychologist said and everything discovered in my daughter's Occupational Therapy evaluation, he agrees that pdd-nos fits so our PCM is sending us to the Children's Hospital up north to see a Developmental Specialist. They should be able to figure this all out for certain so we can finally quit wondering and get a treatment plan in place.

It could take a while to get an appointment. Please say some prayers that we can get in soon!

Guess it does make sense.

Interesting post I just stumbled across:
http://pediatricot.blogspot.com/2010/04/look-homeward-angel.html

Someone, PLEASE PLEASE

PLEASE explain this to me. The instant we start putting on shoes in the morning, my daughter starts throwing a fit. They don't feel right, tie it again, ehhehhehhehhehhh, whine whine, complain. Same thing with the jacket. Continues until the instant I drop her off at school, whether I have to walk her in because she is screaming with tears running down her face or I drop her off because she is just whining and I can't do anything about it anyways. The instant she walks out of school she starts picking fights with her brother, lying, arguing, complaining, blah blah blah. Yet apparently between the time she gets out of the car in the morning for school and walks back out the door in the afternoon, she is a perfect angel.

Either the teacher is full of shit and just doesn't want to be bothered with taking note of any issues with my daughter because she doesn't disrupt the class whereas at least one other student in that class disrupts it every single day - or I need to reevaluate things and take bipolar disorder as a much more likely diagnosis. Because she is anything but an angel at home. Or in the car. Or in the store, or the restaurant, or anywhere else we go!

Someone please explain how she can apparently have no problems at all in school, not even with putting her coat on for recess, never pouts about anything, argues, or complains, is apparently a perfect angel, yet from the instant she walks out the door in the afternoon until she walks back through the door the next morning, she is practically impossible to deal with.

I want a video camera installed in that classroom because I find it very hard to believe that she does nothing at all but say yes ma'am, no ma'am, please and thank you all freaking day.

EDITED AFTER SOME CALMING TIME: Okay, once again the wonderful Internet has saved me from completely losing it. I know I've read it before and even heard it from our psychologist, but I needed the reassurance - this Jekyl and Hyde thing is normal with ASD kids. The use all of their energy to hold it together in school, then they let it all go when they see Mom and feel safe to do so again. It sucks that the parents and siblings are the ones who have to deal with all of the bad behavior, but at least she is doing well in school. I need to stop and remind myself that she does not mean to drive me insane, that she honestly can't control herself.

So....

I'm feeling rather alone here. Stressed, worried, and alone.

PDD-NOS

This is the official diagnosis... at least for now. The doc said that to him she is clearly Asperger's but because she is missing one of the core requirements for the diagnosis as set by the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), this would put her in the PDD-NOS category - Pervasive Developmental Disorder, Not Otherwise Specified.
It's really confusing, because PDD-NOS covers so many different things. It's the fall back diagnosis for kids who exhibit several signs of one of the ASD's (Autism Spectrum Disorders), but don't fit every requirement of the DSM-IV.
Honestly, I'm not sure right now if this is a diagnosis that could change down the road, or what it means for our family. Based on my research thus far, PDD-NOS is considered to be on the Autism Spectrum and therefore to be a form of Autism, but because it does not have specific criteria like the other ASD's it's much harder to get support such as state services and special education in the schools. Some states do provide services for PDD-NOS just like the other ASDs, but Colorado is not one of them. They exclude Asperger's and PDD-NOS from the state programs. As if these kids wouldn't also benefit from the behavioral therapies and such.

So... I'm not really sure how to get this verified. I mean, I guess a diagnosis from the therapist might be enough, but I don't know. Until I see this in writing somewhere, attached to my child's records, I don't know if it is real. Do I need to get used to saying that my daughter is autistic? She certainly doesn't appear autistic to the average person, but that's part of being PDD-NOS - if she was clearly autistic to the average observer, she'd probably fit into all those requirements of the DSM-IV. Do I say that she is developmentally delayed? She's so smart people will look at me like I'm nuts!

So, for now I guess I just won't say anything. No matter what she is diagnosed with, she is still my beautiful, wonderful little miracle who I thank God for every day.

October is SPD Awareness Month!

While doing some research on ways to raise awareness, I learned that October is Sensory Processing Disorder Awareness Month! So please, take some time to learn a little about SPD and how it affects the lives of those who have it or love someone who has it.

My daughter has SPD and I wish we had known about it sooner so we could have gotten her the help she needs sooner!

A couple sites I've found really helpful:
http://www.sinetwork.org/
http://www.sensory-processing-disorder.com/index.html

Stupid rules

In order to see a specialist, my insurance requires a referral from the PCM, Primary Care Manager. In this case, our pediatrician. Now, I have to give him credit, because he has been very helpful to us - we got the referral for the psychologist from him and the referral for the Occupation Therapy eval based on the psychologists recommendation. Based on the OT recommendations, we went today to request a referral for a Physical Therapy eval and an Ortho consult. He agreed to put in the referral for the PT eval, but not the Ortho consult. He said that without a specific diagnosis attached to it, the insurance would definitely deny it.
So, we have to wait for all the paperwork to go through, probably 2 weeks, before we can even schedule the PT eval, which will then take 2-4 weeks to get in for. Then we'll have to start the whole process again for the Ortho consult.
It just seems stupid to me that one specialist can't just refer you to another specialist directly through your insurance, instead of you having to jump through 6 different hoops to get the approvals.

There's more?

Apparently, yes there is. We finally had the Occupation Therapy evaluation for my daughter yesterday. After 2 hours, we left with a definite referral for the actual OT for SPD, as she qualified in several categories for it. However, we also left with a referral for a Physical Therapy eval and an Ortho consult. There were concerns with my daughter's spine and asymmetries in her upper extremities and pelvic alignment. Or something along those lines anyways, I had trouble keeping up. Her muscle development is not adequate either. She also had some motor delays.
So, my poor baby is apparently going to have a lot of challenges ahead of her. On top of the psychologist we will continue to see, she will now have occupational therapy at least weekly once the paperwork is in order, and likely will end up having physical therapy weekly as well. As far as the Ortho referral, I expect that she may end up with x-rays at a minimum and possibly even an MRI.
On top of all that, we learned on Friday that my husband will be losing his job with the milit@ry by the end of February. He should be able to get a new position as a civilian, but it's going to mean a lot of changes for us.
Please pray for our strength in dealing with all of this, and for the health and happiness of my daughter!

New contenders..

So the doc threw out 2 new terms today - Fragile X Syndrome and Bipolar Disorder. Yay. We're still thinking Asperger's is the leader though.

On a much brighter note (I hope), we finally have Isabelle's OT eval this coming Wednesday. It should at least finally bring us some relief with an official diagnosis and a game plan!

Diagnosis...

... still unknown! Surprise, surprise, the doc says my daughter is such a complex kiddo that it's hard to pin her down! She fits portions of 4 different things, the primary one being the Sensory Processing Dysfunction. She also has characteristics of some OCD, some ADHD and some Aspergers. But she doesn't completely fit into any of those categories! So, what he wants to do for now is continue with the plan for Occupational Therapy and see how things go once we get the sensory stuff more under control. The theory being that if you remove the SPD from the equation, it will be easier to figure out what is causing the other problems. Because he is still convinced there is something else going on in addition to the SPD. He's just not willing to "put her in a box" without being totally confident with his diagnosis.

The leading contender right now is what he called "a complex form of Aspergers," but since that generally requires medication to treat, he wants to be certain before we go down that path. As long as we are willing to be patient, he wants to continue evaluating her. Patience is not my strong suit, but in this case I will do all I can because I want what is best for my daughter. If she needs medication down the road, then fine, but we don't want to jump the gun. I personally find it reassuring that this doctor wants to be absolutely certain before labeling my daughter for life, and that he agrees with us that medication should be avoided if at all possible.

So, that's where we are. Still waiting on the referral for OT, going back to see the doc in 2 weeks, and in the meantime I get to try to analyze my daughters relationships. As in, what are the triggers to her often thinking her friends are mad at her and don't want to play with her. Thus far it seems that all the other kids play like normal kids, but Isabelle has trouble inserting herself into the group. She does okay with one on one, but with a group it's like she doesn't know how to interact. Unless they are actively trying to include her, she takes it as that they don't want her to play. It's kind of hard to explain. But I guess an example would be the last time we were all at my neighbor's house - kids from age 1 through 7, and Isabelle kept coming into the kitchen, climbing on my lap, and telling me that no one wants to play with her. I'd tell her to just go join in, shortly thereafter she would be back telling me the same thing again. A couple of times I went and helped her get in with the group by asking the other kids what they were doing then suggesting a way for Isabelle to join. Shortly thereafter, she'd be back upstairs pouting again. When I'd go down it looked to me like everyone was playing together fine. She often seems to have trouble fitting in with the group, but I can't really pinpoint the problem.

Anyways, this got to be a lot longer than I intended! I basically wanted to say that we're really not much further than we were 6 weeks ago! I guess it is kind of nice to have an expert confirm what we've always known - our little girl is one tough cookie!

With any luck, you'll never know...

what it is like on a day to day basis, dealing with special needs. It's exhausting. It's extremely stressful. It takes a huge toll on your mind and body. It's non-stop all day long. And often there is no help, because who can you leave your child with when even their own parents can't take it?