Wednesday, October 26, 2011

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!

Thursday, October 20, 2011

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.

Thursday, October 13, 2011

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!

Sunday, October 9, 2011

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.

Friday, October 7, 2011

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. 

Thursday, October 6, 2011

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.

Sunday, October 2, 2011

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 :)