Behavior Intervention Plan

Since the school keeps denying services to my daughter, I now have another idea to get her the help she desperately needs. Thanks to a suggestion from a friend, I am requesting the school psychologist conduct an evaluation, observing her behavior (the scratching/skin picking) to determine the antecedents, causes, whatever, and develop a Behavior Intervention Plan to correct the behavior. Usually, I believe a BIP is used for problem behaviors such as hitting, kicking, biting, tantrums... but this is still technically a behavior that is causing her injury, so hopefully this will cover it, since nothing else does. They refuse to even evaluate her for OT, stating that OT can not be a stand alone service, so unless she is already receiving special education services, which she is not, they can not do OT. We just had a private evaluation and will get the results next Friday. So, cross your fingers that this request for a BIP works, and if you happen to know anything about the process (I believe it is called a Functional Behavior Assessment, which leads to the development of a BIP), please share! THanks!

Sleep? Sort of...

So my boy has been sleeping in his own bed the past few days. We are bribing him to do so. However, he is still waking up at least once and needing to be tucked back in. I know I should not complain, but it would be really great if he would sleep straight through the night so we can too. We have tried showing him how to tuck himself, but he apparently can't get it just right. I am going to make him a weighted blanket to see if that will help. More on that later, when I actually find the time and motivation to do it!

Sometimes...

every now and then... I feel like the worst mother and wonder if there really was a reason God made me infertile.

Sleep issues

My son does not sleep. Well, he sleeps, but he is awake by about 1am every night and used to go play or watch tv, occasionally dozing on the couch. We started letting him sleep with us after he got up. We tried a bed on the floor in our room, but he wouldn't use it. So for quite some time, he has been sleeping with us from anywhere from 11pm-3am on. He still tosses and turns a lot, and often ends up pressed up against me to sleep. This makes it impossible for me to sleep well. Plus, he is not getting enough quality sleep. So, we tried melatonin. Went up to 3mg on the neurologist and psychiatrist's advice and he would still wake up. Finally, we tried trazadone. The first night, on 25mg, he slept like a champ, in his bed all the way through to 6:30am! After that first night though, he started waking up again. We raised it to 50mg with no change. Now we are about to start locking him out of our room again, but I am concerned he will just go back to playing and watching tv when he wakes. Really, we need him to sleep, all night, in his bed. Doc said we could go up to 100mg on the trazadone but I am hesitant about medicating my kids. Yes, my daughter is on a couple of things, but we fought tooth and nail before giving in on it. So I am thinking about trying to make a weighted blanket. My son has a lot of sensory issues, and the fact the he likes to sleep pressed up against me makes me think he craves pressure during sleep. So I guess I will be fabric shopping soon!

Happy Birthday!

My baby boy turns 5 Monday! We had his birthday party today, the first ever with his peers. Three little boys from his preschool class came and everyone had a good time! Pizza, playtime, paper plate snowman craft, presents, cake, and it was all done! I am so happy that everything went well!

ABA

How to decide on where to get ABA? One place that was referred is almost 2 hours away. Other places are closer... but I trust the dr that referred us. Hmmm...

An update...

I will try to keep it brief. lol My daughter is now 8. Her dx include Asperger's, ADHD, Sensory Processing Disorder, Anxiety-NOS, and Mood Disorder-NOS. She has a very hard time controlling her emotions, be it crying uncontrollably or screaming in anger over the littlest thing. She also struggles with friendship and social situations. She does have 3 friends right now, one that she gets along best with, 1 that she has a lot of conflict with but still spends a decent amount of time with, and 1 more that she sees now and then. We have discovered that if she has more than one friend over at a time, it is very difficult for her to manage and there ends up being arguing, or my daughter getting upset over whatever. A while back, I decided to share my daughter's diagnosis with some women I thought were my friends, who were around my daughter frequently because this group of women and their children were always together. The response I got was quite shocking - from "it's really none of my business and we don't see it anyway" to "she just needs more love" to "I just hope you aren't medicating her for no reason", yes, I am serious. These people literally told us that the only thing wrong with our daughter is that we don't love her enough. Medication was not even mentioned, not like it was any of their business, but she was not on any. There is no medication for Autism. Along with all of this, they stressed how much they adore our daughter and would like to include her but they just really don't like us, though they would never take that out on our daughter. Needless to say, from the moment I shared the information with them, they began excluding our daughter from things. All of the girls would get together and go into one of the houses with their sleeping bags. There would be parties next door. My daughter would sit at the window and cry. At the age of 6, she had to learn what it meant to be excluded, along with learning to be different. No concern was ever given for how she was dealing with things. Because of all of that, I have been very hesitant to share information with anyone that does not absolutely need to know. One of my daughter's friend's Mom noticed some things and mentioned them to us. Our daughter was struggling to maintain her relationship with this girl, because of the problems caused by her difficulties. My husband and I made the decision to talk to this Mom, because this friendship is important to our daughter and we really like this girl and her Mom. So far, it has only been a couple of days, but she seemed very understanding and very grateful we had told her, as it explained some of the things she had seen. She even asked for suggestions on how she can help when our daughter is over there! Such a completely different response, and so much what I expected before - I guess you just have to be sure someone is actually your friend and actually cares about your child before you share. My son was recently diagnosed with Asperger's as well. He does not fit the mold quite as well as our daughter does though, so we are hesitant to accept the diagnosis right now. When he is a little older, he will be re-evaluated under the new DSM-V coming out, and that should give us some more concrete answers. He does have severe ADHD, Sensory Processing Disorder, and an Articulation Disorder (speech). He is in speech and occupational therapy weekly and has made great progress with his speech. I still question my sanity on a regular basis, but I would not change my kids for anything. They are my life, my heart, and I would do anything for them.

It's been a long time!

Wow, I am so happy I can finally do this again! I lost my log in information and then for some reason blogger or whoever would not accept my stuff to prove my identity. I decided to try a few new combos today and it worked, I got back in! Is there anybody here? Well, if not, I don't mind talking to myself, I do it all the time! lol I will come back and do an update soon!

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.