Winter Concert blues

Sometimes I just don't think things through.  Today was one of those times.  Brittany's middle school's winter concert was today and I was by myself with all the girls as my husband was gone for the day.  However, before the concert, I had the audacity to try to go to the dog's first group lesson on the intermediate training level.  Yes, with all four girls in tow!  I can hear you now..."What were you thinking??!!!!"  Perhaps I should've seen this coming but I digress. 

LT, our lab mix, didn't do well with all the distractions at Petsmart on an especially busy Saturday.  The girls wondered the store while I was trying, unsuccessfully, to get him to heal only to get wrapped up in the lease as he would try to greet every dog and person we walked by.  My girls came back all excited saying that the humane society was there with a lot of adorable small dogs and that Katherine really wanted a chihuahua now.  Yeah right!  Lt would give it a heart attack before we even left the store not to mention I don't want another dog or other living being to take care of right now, thank you very much.

Once out of that mad house, I had to race home to get Brittany's viola, which she had forgotten and also to drop off Lt before driving to the middle school for the concert.  On the way there, I noticed I had one mile until my tank of gas was empty so I thanked God that I made it to the gas station.  

At any rate, we finally made it to the concert and to my horror, I discover that it is in the gym and there isn't a seat to be seen anywhere and that the chorus will be performing first.  There was a ton of noise and bodies milling about everywhere.  A miracle occurs and we managed to find a bench with enough room for the four of us right in front of the orchestra, which was good because I was then able to see Brittany come in looking like she didn't know where to sit or what to do.  Turns out she had forgotten her music.  Forgetting things has been her thing lately.  I was able to go and help her sort it out before the chorus started singing.  When I came back to the other girls, I found to my dismay that Mary was terrorizing Janet and Katherine.  I ended up sitting between them as the chorus sang.  Unfortunately, Mary just continued to escalate and Katherine just couldn't sit still and be quiet so by the time it was the orchestra's turn to play, Katherine was yelling that she needed to go potty over and over and Mary was trying to reach over me to pinch and flick Janet.

I did the only thing I could do.  I got up and took all three of them out.  I felt horrible since it meant that I was missing Brittany playing.  I raced Katherine to the bathroom and got back in time to hear the end of the second song.  I left the three girls in the big empty room next to the gym so I could at least hear the last song.  Bad decision.  As soon as I went back in to check on them a couple minutes later, Mary had Janet pinned to the ground and Katherine was wailing hysterically.  I rescued Janet and went to find Brittany so we could go home.

I couldn't find her so I just stood in the middle of milling crowd waiting for her to come back.  That was when I realized that Janet had left my side again.  I went again to check on Mary and found that she had Janet was pinned AGAIN!  This time, I took both Katherine and Jess with me and Mary followed bound and determined to get at Janet every chance she got.  But by then I had my hands full with Katherine who had then decided that she wanted to run into the crowd and find Brittany and was whining and wailing for me to let her go.  So I was holding onto Katherine and blocking Mary from Janet with my body all the while people around me cast me pitying glances every now and then.

Luckily Katherine is still little enough that I can still "fireman" carry her because that is what I needed to do by the time Brittany got back to us.  She had kicked off her shoes and had been rolling on the floor.

To say the least, I am beat today.  The worst part is that the girls have been begging to go to the bookstore ever since then but I have absolutely no desire to step out in public with them for a while.  At least not without a lot of backup and a big sign that says "They have autism.  Help or go away!"

504 for Brittany!

So I am celebrating a small success in getting the "team" to agree to write a 504 for Brittany today.  Also I was able to get them to realize that all the negative consequences to her undesirable behavior was only serving to aggravate the situation and wasn't helping.  So hopefully we will begin to see my bright and bubbly, eager to go to school Brittany returning soon.  Then again, she just turned 12....

A possible job for my dog

Yesterday, Mary had another meltdown while the ABA tutor was here along with the tutor's supervisor. I think that this makes every time the supervisor has visited, Mary has had some sort of fit.

At any rate, this time she flew off the handle and started attacking Janet and calling her a Pest over and over again. Repeating, "gotta get the pest, get the pest. She's a pest!"
Eventually I got in her way and confined her into the corner of the dining room where she than began beating me up and spitting in my face.

I haven't been feeling well lately though so my energy for this disappeared quickly and I was forced to call my husband up from doing his job downstairs.

He brought our 2 yr old yellow lab mix dog, Lieutenant or Lt, up with him.  Mary immediately began attacking the dog instead!  My husband was then able to lead her and the dog upstairs with some dog treats and let Mary "order" the dog around until she calmed down.

At the dog's last day of beginning obedience lessons, our trainer told me that there is a good possibility that Lt has the potential of being a good service animal to my three girls if I was willing to put some work into it. 

I had looked into a service dog before and dismissed it as unreachable considering the thousands of dollars they want for a fully trained dog.  I never dreamed it was possible that we could get one this way and for a whole lot less.  At least for Mary, animals, especially dogs, really have a calming affect on her.  It would be fabulous if Lt could become trained enough to become an official service dog.  I figure that at the very least, going through all this training, we'll come out with a very good dog that will have a good affect on the girls regardless of whether he is certified or not.

Holidays Headaches

I have discovered that holidays aren't as much fun as a parent as it was when I was a kid. I know, duh, right? But really I think as a parent of kids with special needs, holidays pose a whole lot more problems than just the difference of having to cook and clean, etc.

Although my girls love having time off of school and love the excitement of a major holiday like for instance, Thanksgiving, which we just celebrated today, they don't really enjoy having major breaks in their normal routines, or having to visit other people's houses and to eat strange food and to deal with lots of commotion.

When the girls were little I was less concerned about breaking their routine. I'm not sure why that is. Perhaps because I hadn't connected their behaviors to their environment yet or something. At any rate, now, as I am seeing more and more improvement in their behavior due to the structures and routines, I am more anxious on days where the routine is completely thrown out the window.

Tonight I was at least able to maintain the bedtime routine and the girls were relatively calm because of it. There was no crying and fighting or anything like that. I guess that really is worth all the effort and the little sacrifices I have to make in order to maintain it.

Zones and schedules

It looks like all the work I put in to making the picture schedule and setting up chore "zones" for the girls is paying off. My token system is up and running again with the girls eager to earn points for jobs and good behavior. My house continues to look neater as every day I help the girls take care of their individual zone for the week. It is far from perfect but so, so much better than the chaos that reigned supreme the last six months since we moved.
What I love most about it is that I am not going nuts trying to be supermom. There is such a nice balance right now that I was even able to do a hobby of mine today! I better knock on wood or I fear this won't last :)

"Bright not broken"

I am reading the book "Bright Not Broken" by Diane Kennedy and Rebecca Banks with collaboration from Temple Grandin. I was drawn to this book because of what I'm dealing with Brittany. I feel that this book describes perfectly the dilemma we have with her.

In their book, the authors refer to children that are gifted and have a diagnosis for things like ADHD and Aspergers as twice-exceptional or 2e children. I feel that describes Brittany exactly. She is always amazing me with the caliber of things that she writes or draws or knows about. Yet she is constantly frustrating me with things like refusing to take showers, constantly getting distracted in the morning so that she misses the bus, bullying her sisters just because they annoy her and don't follow the rules like they should, and throws temper tantrums and slams doors.

I am curious to see how these authors propose that one deal with the paradox of either giftedness masking a disability or a disability masking giftedness so that I might be able to help find the balance for Brittany. Right now, at school, I am dealing with the first problem where the school doesn't feel an IEP is necessary due to the fact that Brittany's grade don't look too bad.
I have parent teacher conference tomorrow. Wish me luck. I hope it won't be as bad as I fear it will be.

The many medicine fights

I know there is a lot of debate about medicine and its use and overuse in some cases, etc, etc.  I have to say that, personally, I have had mostly positive experiences with medication since I began to take them for depression back in 2002 and have definitely had great success with the medication that has been prescribed to me since being diagnosed with fibromyalgia last year.  That being said, I do not view taking medicine lightly and have always, for myself, weighed the benefit against the risks.  In doing so, I feel that I have found come to a good point for myself at present.

I have found that my philosophy doesn't change in regards to medication and my children however as I have come to realize, finding the right fit and weighing the benefits and risks are much more complicated. 

Katherine has been my biggest challenge lately.  She is in a constant state of worry and anxiety.  On top of that she suffers from allergies.  I thought the allergies were a simple fix.  We were told to give her Zyrtec and do a regiment of washing her nose out.  She hated getting her nose washed out and it caused her to panic having water rush up her nose, so I just resigned to just giving her the Zyrtec syrup which she actually liked.  Unfortunately, it wasn't too long after beginning this medication, that she started coming into our room in the middle of the nights with nightmares.  Apparently, Zyrtec has a tendency to cause nightmares in small kids.  We tried to switch to Claritin but she doesn't like it and refuses to take it. 

For her anxiety, the neurologist has started us on a trial and error experiment to see which medicine will help Katherine.  The first was a patch that was supposed to stay on for seven days.  Well, Katherine ended up tearing it off (without me knowing), after the third or fourth day. But not before the teacher, who was not aware that she was on medication noted that Katherine was not her usual congenial self at school.  As soon as the patch was removed, she was back to "normal."  Fail.

So we tried the next thing.  A 1mg tablet of Intuniv that I crushed into some Nutella so she could take it.  That night she didn't just have a nightmare, she had a night terror, where she was screaming out in her sleep and wouldn't wake up for me.  And the following day around noon, I get a call from the school saying that Katherine couldn't stay awake in school and that she probably just needed to go home.  Fail. Again.

Next, the doctor had me try halving the dose and trying that over the weekend.  It happened to be Janet's birthday the next day and my husband had noticed that Katherine seemed so out of it during the party.  sigh.  fail.

I don't know what it is about this particular medication that the doctor likes but she is now wanting us to try an even smaller dosage in syrup form.  At this point, I am very hesitant about the whole thing since I haven't seen a positive response yet and only negative. 

The doctor that prescribed the Risperdal to Mary and Brittany had a philosophy that, with children, any side effect to medication is unacceptable.  I tend to agree.  At least when I'm taking this or that medicine, I am able to discern the differences in my body.  It is a much more difficult task when it comes to my girls.

With Mary, we were lucky.  Risperdal has worked wonders.  It has freed her from the fits that plague her and have allowed her to progress in her academic and social skills by leaps and bounds.  The only problem I have is when she refuses to take it.  The fits return causing more defiance and a deterioration of all that she had gained.  Luckily for us, there is an almost immediate rebound as soon as she starts taking it again.

I know that this is only one part of the puzzle.  I was never very good at science in school but I feel like I'm doing one of the most important experiments of my life with so much riding on the outcome that I really can't afford to get a bad grade on this one.  Heaven help me.

Advocating vs Overprotecting

Today, Brittany missed the bus, again. This has become such a frequent occurrence that, this time, I recieved a phone call from the guidance counselor at the middle school. She explained to me that three tardies equal on absence and students are only allowed five absences per semester. Anymore than that and technically, they should "fail" their classes. Brittany has 13 tardies and 5 absences already.
I tried to explain that I had foreseen this and had sought an IEP or 504 in order to prevent the level of stress and anxiety that is, I believe, the root of her slothfullness in the morning. I went on to give examples of stressors that I'm seeing like long term papers and projects that she just can't seem to get done. Or misunderstanding instructions or just making careless errors on math problems when she does know how to do the operation.
During the course of the conversation however I was asked if I always "come to her rescue." This has given me great pause because I don't view myself as shielding any of my children from the natural consequences of their choices. Granted it is easier with things like wearing a jacket in cold weather.
I view this as more complicated. We are not dealing with a normally functioning twelve year old girl. Heck! Twelve year old girls are messed up to begin with! You add Brittany's inability to tolerate change and injustice plus her lack of ability to put herself in other people's shoes and I'd say we'd be lucky to get anything productive out of her the next few years!
But the question remains. Do I let her continue to crash and burn and feel the full weight of the system bearing down on her or do I try to get modifications to the system put in place so that it lessens the stress on her and on those things beyond her control so that she'll have a better shot at actually succeeding? I am going to have to sleep on it.

Getting worn down

I made some progress with Mary making a picture schedule for her where she can take each task off and put it in a "done" box when she accomplished it. It took all day Saturday and a lot of lamenating pouches and velcro but I'm glad it is up and running.
I was once told that you could either spend your time setting up a good positive system before or spend it nagging and punishing and yelling afterwards. Both require about the same amount of energy. Ive done both and have seen the value and peace that prevails when I chose to do the former.
However, I'm really worn down from my struggles and it is so hard to put in energy at all. That would probably be my Fibromyalgia flaring up. It always does at inconvenient times.
I have to focus on the little victories. Mary used her schedule two days in a row. At least we are on the right track for that.

Mary melts down

Today was Mary's first day with her new ABA tutor in this area. Unfortunately most of the time was spent with Mary in melt down mode. Still not sure what was the underlying cause of the fit. The catalyst, however, was, I think, not wanting to do her homework. Or maybe it was having the tutor there. Or both. At any rate, for the first twenty minutes of the fit she played an impromptu game of hide and seek. She would run to a room and we would follow. When we finally cornered her, she did what all trapped irrational creatures do, she lashed out. Kicking, spitting, stomping on my toes, etc. I'm glad the tutor was there to help me restrain her without hurting her or getting hurt myself. Having a ninety pound kid thrashing around is a scary prospect. I can't imagine what people do with larger kids.
This lasted a good twenty mins. before we were able to get her to take her meds and calm down. I'm exhausted. The crazy thing is that Mary is completely fine afterwards and it was like it never happened. It is like a Dr Jeckle and Mr Hyde thing. All I need is the antidote!

MRIs are done

Tonight we had our last sedated MRI done. We are now old pros at the whole process. I am grateful to the hospital staff that made these procedures so nice for us that my girls love the hospital and wheel chairs and were asking when their next MRIs will be done. Not for a good long while if I can help it. I am beat.

See! I'm not making this up!

The supervisor for Mary's ABA therapist was here today finishing up her intake process. She and I were reviewing the goals that we had discussed previously and were trying to tweak them. One of the goals for Mary is to help her recognize the signs of a fit coming on and to seek help or to self regulate her behavior so that it doesn't escalate into a full blown fit where she is seeking to hurt her sisters or property.

The tough part about this goal is that she is a pretty good kid when she is not having a fit and so often people who are just meeting her for the first time or that have never seen her fits have a hard time reconciling the Mary they see with the Mary that I'm describing. I liken it to Dr. Jeckle and Mr. Hyde or perhaps the Hulk.

At any rate, it was while we were discussing this very goal that "Mary Hyde" storms into the room and gives the supervisor a near perfect example of what I had described, complete with baby talk, property damage, and aggressive behavior toward her siblings. See! I'm not making this up!

Not a day of rest

I really don't like to admit it but I dread Sundays.  Going to church is a battle from the time we rise till the last "Amen."  And sometimes there are some residual affects that last into the afternoon and evening depending on how severe things got and what Monday has in store.  Yep, Sunday is no longer the day of rest that it used to be, you know, back when I was fifteen. 
Today wasn't much different.  Mary didn't want to get out of bed, as usual, Katherine decided she wanted to wear pants and a t-shirt under her dress for some reason and Brittany was upset that the back of her shoes dug into her heals. 
I fixed most of the issues by making a deal with them that they could have their stuffed animals with them during the main congregational meeting but they had to give them to me for Sunday school.  I gave Brittany the option to wear socks with her church shoes or where her school sandals.  This is where giving them a choice YOU can live with is important because every time I saw those white crew socks with those black pumps, I just cringed. 
Mary had a fit during Sunday school and ran out part way through telling one adult that she was getting a drink while telling another that she was going to the bathroom.  When I couldn't find her at either place I knew I was in trouble. Once I found her, she was already in an unreasonable state and all I could do was to try to keep her near me, which is difficult because she is almost 90lbs and she resorts to stamping on your toes and scratching your arms, if she can. 
I got lucky that it didn't last too long and that downloading Angry Birds on my iPhone and letting her take out her frustration on "evil piggies" did the trick to calm her down.  Sometimes nothing works and it just has to run its course which often takes an hour or more.
By the time Mary was calmed down however, Katherine was acting up in her class and I had to sit with her.  One of the teachers there made the comment that they hadn't understood some of my facebook comments about my rough times with my children until today seeing one after another of my girls have a melt down. Nice to get some acknowledgement.  Once again I am reminded that my girls' issues are just not that apparent, which is both a blessing and a curse.
Well, after a long "Day of Rest," I need to actually rest.  I am worn out.

Disposition of Referral

I finally had my first meeting with the middle school about Brittany.  It has been like pulling teeth to get things going for her.  The main problem is that she doesn't exhibit the same malfunctioning behavior at school that she does at home.  She did in fourth grade when I sought the diagnosis.  In fifth grade, she had a really wonderful teacher, different school, different state and we lived with my in laws.  Her teacher made accommodations for her automatically like letting her draw on every piece of paper or assignment not only without punishment but with praise for her artwork and creativity.  When I asked for a 504 or an IEP stating what accommodations were made for her that had help her be more successful there, he said that he wasn't doing anything out of the ordinary. 

It is really hard to see my brilliant child struggling, knowing just how much strain it is putting on her to be so good at school because I have to deal with the aftermath at home.  I heard the same line today that "luckily" the school hasn't seen the same disturbing behavior at school as I am seeing at home.  Well, I am "lucky" that this time around I had a doctor's note stating that my child needs an IEP and they didn't just brush me off.  They didn't write her an IEP or a 504 but at least they are starting some accommodations and will meet every week to evaluate how things are going.

It is times like these that being an advocate for your child is so exhausting.  I feel like I'm continually focusing on my child's struggles because those are the things that are going to get her the services she needs.  Her strengths are going to get her ignored.  I am looking forward to the day when her gifts will outshine her struggles. 

Pure torture is spelled "EEG"

Never having had an EEG myself, I had no idea what to expect.  All I knew was that it was going to be 24hrs of monitoring of my daughter's brain and that she wouldn't be able to go to school during that time. I had no idea that there would be very smelly glue to stick the probes on her head that stung her skin for several minutes after application and that they would need to be air blown in order to set with a very noisy air gun and that this process would take almost an hour.   Nor did I know that to remove them would require an even more stinky acetone solvent that gets rubbed into the scalped and stings the eyes and nose with the vapors to the point that Brittany cried.  Unfortunately, the torture didn't end there.  I spent the better part of two hours with vegetable oil and a fine tooth comb trying to get the residual crap that remained stuck to her scalp and hair. 

I have to say that I am glad that Brittany was the one to go first being the least sensitive to the three on the spectrum.  She pushed through it amazingly even though it was really rough on her.  I have no idea how Mary or Katherine with deal with it at all.  I have decided to cancel their appointments because I just don't think they'll be able to handle it.  Unfortunately, there is no other way to test for the possibility of seizures and when they have the sleep studies done, they will have wires glued to their heads anyway.  At least for that test, it will only be for overnight and on a weekend so maybe they'll handle it better.  Well, that's what I'm telling myself anyway.  Wish me luck.

Dogs have ADHD

Last year when Brittany was diagnosed with Asperger's, I found this fun picture book entitled, "Cats have Aspergers."  As Brittany's most favorite thing is cats, it was a great match.  She loved the book and still refers to it occasionally.  

Mary, on the other hand, loves dogs and we had made a deal with her that we would get a puppy for her when she turned twelve.  Unfortunately for Brittany, my husband is allergic to cats.  At any rate, counter to our deal with Mary and my good judgement, we adopted a 2 1/2 year old yellow lab mix last month, as a running companion for my husband and perhaps to boost the male population in our estrogen dominated household. 

It was about this time that Brittany discovered, in the back of her book, additional titles by the same author, one being: "Dogs have ADHD!"  I have to agree that after a month of having Lucky in our house, it feels like we have just added another "special child" to the "pack."  Ever see the dog named Dug in the Disney film "UP?"  I swear if Lucky could talk half of his conversation would be interrupted by squirrels too!

Although, I am kinda wishing I spoke dog language or autism language or maybe just Pig Latin because English is just not working to get everyone getting along as they should.  For the most part, Lucky is a good dog but he just can't help himself when my kids, who are just trying to have fun, start acting like rowdy puppies.  He just has to literally jump in the fun.   That just doesn't ever turn out well.  He starts nipping and all of a sudden, it isn't fun for the girls anymore.  No matter how many times I explain it however, my girls don't seem to get it.

We are looking into obedience classes for Lucky but really I need them for my girls too :).  I hope that even if Lucky has ADHD, that won't prevent him from getting past some of these issues because I'm not sure they have Ritalin for dogs :)

Allergy and Anxiety

So I took Katherine to the allergist yesterday because she is constantly rubbing her nose and complaining that it is runny.  Turns out she is allergic to trees, grass, dust, dogs, cats, guinea pigs, horses, and possibly peanuts and almonds.  The doctor put her on medicine and a regimen washing out her nose.  She is okay with taking the medicine but when it comes to squirting salt water up her nose, she pretty much acted like I was drowning her.  In her defense, she was and has been pretty willing to try everything at least once because she is so anxious about having allergies. 

Looking back, I kinda wish I had asked the doctor to tell me about her allergies out of ear shot because Katherine is my child that has major anxiety issues and obsesses about health and safety.  On the way home she wouldn't stop worrying about things like being able to get out of the car because of the grass or what she would be able to eat.  I showed her how to read the labels on things but she is taking the peanut part of the issue to the extreme.  I am not even sure about that one since she has been eating peanuts and peanut butter her whole life with no apparent adverse affects.

The other problems come in the forms of our pets.  We have a big yellow lab and a long-haired guinea pig.  We will have to make some major adjustments in order to keep them and maintain a happy healthy environment for Kate.  Yep, that is just what I needed, more cleaning :)

I have to say that I am glad I went.  Knowing is better than not.  I am just hoping that I can calm Katherine down enough so she is not so stressed all the time.

Going to the Neurologist

Yesterday I got to take my oldest to the pediatric neurologist.  Brittany was diagnosed with Aspergers in May of 2010 at the end of her fourth grade year but unlike Mary, just under her, she has never received services for having a diagnosis.  So this was a big step towards getting her the help she needs. 

One thing I appreciate with Brittany is that I don't have to explain her to anybody.  She is highly verbal and isn't shy.  It makes appointments like this almost gratifying or at very least validating.  When she talks to the doctors and obsesses on how much she likes and knows about cats, for instance, while bouncing around the whole room messing with this or that, it pretty much verifies her diagnosis without me saying a word about it.  It is much more difficult with her less verbal, shy sisters.

Even though the neurologist has no doubt about the diagnosis, she has order a slew of tests to be done from an EKG to an MRI to a sleep study.   Not sure what we'll find out at the end of all of this and I'm wondering if the same protocol is going to be followed for my other two.  They get seen next week.  Oh joy!

Hello, Whatya doing?

About 3 years ago, my second daughter got diagnosed with Pervasive Development Disorder-Not otherwise specified (PDD-NOS) and my journey of having an official diagnosis began.  As anyone with a child or children on the spectrum can tell you the journey of living with the disorder neither begins or ends with this diagnosis.  Even with two more of my daughters officially on the spectrum since that first diagnosis, I am still trying to figure out the advantages of having them labelled as such.  I do appreciate being able to turn away those weird looks with the short explanation that my child has autism but since they are all high functioning, I can't help wondering if that explanation is enough for most people. 

At any rate, I have been dealing with high need, high functioning children for almost twelve years now.  My oldest daughter, Brittany, is turning twelve soon and has Asperger's and ADHD.  Mary, my second, is 10 and has classic high functioning autism and Katherine is seven and has just recently been diagnosed with PDD-NOS.  My youngest, Janet, is about to turn 5 and is as neuro-typical as you can get (thank heaven!).

I have started this blog really for my own sanity.  I needed a place to write down the trials and triumphs of my life raising these wonderfully challenging children.  I figured that if I did a blog then perhaps I might find some kindred spirits out there that could share in my journey.