March update

I'm losing track of days at times, too much going on. I'm not sure how I'm getting anything done at all but somehow it gets done.

Mostly.

Good news over the last month:
We spent Spring Break at home with the kids. No therapies, no karate, just family time. We went to Going Bonkers, ate out. We hoped to do more than that but Groupon had an error on our movie tickets the day we could go, and other places were crowded to the max. We'll try to go to the Zoo and other places on the weekend as money allows or as there are group-buying-site deals. They said they had a good week and that is what matters most to us.

Caitlyn's grades are good, and she's made some friends both in the neighborhood and at school. I'm grateful for that. She spent last year without any real friends and it was incredibly hard on her. I'm also grateful for the continued involvement of her Big Sister Rachel in being there for her and being her mentor (and granting me those moments of respite). She got permission from her teachers to apply for pre-AP classes next year in middle school. I'm worried about the pressure and the amount of work required, but I think she should have the chance to see if she can cope with the workload. She's so brilliant!

She has been on a trial of Concerta for 3 weeks and we go tomorrow for a follow-up with the dev ped about it. Her focus has been a little better, but after lunchtime she seems to "crash" into extreme irritability. We'll be asking about that. I don't know anything about changing dosages with this medication or balancing it out with her other medicine (Celexa). I have not seen the improvements we had hoped to see by 3 weeks. If you can tell me about your experiences with Concerta, please do?

Her greatest accomplishment was a "mock Congressional hearing" held at the school one evening two weeks ago. Her speech therapist helped her practice and we assisted at home with being her audience and pretend "Judges". She received excellent marks, and cracked up the volunteer judges at one point when asked what she would do to convince her older brother to vote - "I'd kick his butt". We're very proud of her, she had to overcome a lot of obstacles to participate including a timed, memorized speech she wrote herself; not fidgeting during recital; using hand positions to denote when she wished to speak.. and stage fright of epic proportions. I'm so proud that she was brave enough to do it and that she succeeded beyond my wildest dreams.

Rowan continues to regress in many areas, but we had a breakthrough with the OT today. We were able to get 5 minutes of sustained eye contact while she was on the "egg swing" w/a lap pad. She was able to do some fine motor skills work (tracing, drawing, coloring) between sensory activities - she produced more work product today in one OT session than she has been in a week at school. We also had a photo shoot today with a great photographer who got some excellent shots. I will share them after viewing/purchase next week. She really enjoys hamming it up for the camera!

Our oldest son Ashton received his gold belt in karate, and Caitlyn has received her third gold stripe and will belt test next week. Please wish her luck, she is very much looking forward to this and has worked hard for it.

The not so good news: 

We had OT and PT private evals on the girls with mixed results. The greatest difficulty is their feet; Caitlyn's toe walking has led to collapsed arches and over pronation. While orthotics may be necessary ultimately, we are currently exploring other options such as the Skechers extended-wear Shape-Ups since she wears a women's size 8. In the week since we purchased these her pronation is greatly improved while wearing them and her gait has some correction. She appears to be less "clumsy" with her balance as well. We also purchased some arch-support Asics for gym class and other activities where the Shape-Ups might be a little risky.

Rowan's evaluation was much worse. She has zero degrees of.. please pardon me if I don't get the terms correct - heel drop ability/foot towards knee extension. She is an extreme toe walker, nearly en pointe when barefoot. Due to her small shoe sizing and wide foot width, "articulated AFO's" orthotics are being heavily suggested by the PT. Her OT report came back with a suggestion for a hand splint/brace as well to assist in her fine motor skills. The total cost we are looking at is $1200. We are hopeful that donations through Once Upon a Hero will be able to assist us with this. You can view our Wish here: http://www.wishuponahero.com/wishes/?id=880105#comments - and please, please share it on social networking sites. The greater visibility we get... if we can get 1000 people to donate $1 we will be extremely close to our goal.

We DO have some savings, but are working on setting up a PT/OT area for the girls in what was the upstairs playroom. Today I was given a list of what the OT felt were the most beneficial swings and equipment that she is responding to. I found a reasonably priced maker of weighted blankets and pads on Etsy that I'm following through on. It will likely take all of our savings to set up this area, hence our request for donations for the orthotics.

We have good/meh insurance. It's good that they cover OT, PT and speech - but our limits are not great. We have a self-funded union plan with a hard limit of 30 PT visits per calendar year, and 30 visits combined of OT/speech per year. In order to give the girls the best help, we need to be prepared to "go it alone" for a few months at the end of the year while waiting for calendar rollover, and also being able to reproduce their therapy at home to do it more than once per week will be highly beneficial. I'm watching craigslist and such - if you know of a discount supply for pediatric OT/PT items, please let me know as wrll.

Our copays are running about $500 per month right now on meds and therapy. I'm very grateful that we are able to cover this and have made cuts/savings in other areas. We are receiving partial scholarship for Caitlyn's special needs accomodated karate classes, which helps.

So a mix of good and not so good. I feel confident that once we get over the initial investment hurdles for the equipment and installation, and are able to go to once-per-two weeks on the therapy (after I'm trained in their exercises/spotting) that life will again approach balance. It's only hard right now, and we WILL get through this.

Rowan's evaluation through the school district continues. I believe we will go to ARD sometime in late April with the results. Wish us luck and bless you all.

It's sad when I'm struggling to update just monthly now.

Rowan (dd2) was diagnosed with Asperger's, dyslexia, ADHD, coordination issues, and generalized anxiety disorder.

*le sigh*

We're coping. That is the best I can say right now. She went to her first OT visit/eval and will be having both OT and PT on Wednesdays. They are recommending orthotics for her toe-walking, but right at the moment I don't want to do that. I'm not making the decision to say "no", I'm just not up for making that decision yet.

In other news, I can't get our insurance to verify if they cover ABA. They keep telling me they don't know what that is. I also cannot find an ABA provider in our major metro area (Dallas) that takes our insurance. Easter Seals doesn't, and we are not within their driving distance for in-home, either. I keep hitting brick walls.

I attended the first informed consent meeting with the school district to start her evals with them so we have an IEP in place for kindergarten in the fall when all is said and done.

We've started a trial of Tenex to help her sleep and with her adhd. It sort of works, the side effects are not TOO bad, but I'm thinking of stopping and trying the Abilify instead before deciding what to keep her on.

For news regarding Caitlyn, she's been doing great. There are still meltdowns and food stealing, but it's not as bad as in the past or even close. She is making some friends both at school and in the neighborhood. And for this six weeks, she made "A" honor roll - with a score of 102 in Social Studies <3 Very very proud of her and making arrangements for her reward for that achievement.

I'll try to post more often/work on moving the blog over or something. Things are just very busy and while I know you all love my updates I don't see them as being much more frequent until school is out for summer.

Thank you to everyone walking this journey with us. And peace to those walking their own.

Possible new blog adress/name

We may be moving to a more inclusive blog title due to some... not completely unexpected, but wrenching news for our family.

Our youngest, Rowan, has just been diagnosed on the spectrum as well. Things moved very quickly as we knew straight away where to go. Following a mutually-requested teacher conference where we learned of the teachers' concerns (our concerns had been about her loss of skills since last year and concern about the curriculum), we made an appointment with the speech path to have her speech evaluated. She ended up testing as having a mild speech issue, but the path referred us to the developmental pediatrician in the practice from observing her in combination with the teachers' concerns that I related.

We have only been told this week that she is "on the spectrum". We still have a meeting and more paperwork to do with the child psychologist, and the teachers' Conners and other forms had yet to be done scaling.

I had hoped that some things I was seeing were simply her copying Caitlyn, but she has presented several things that Caitlyn does not at all, and is not presenting others that Caitlyn is (such as the meltdowns). She is now at the exact same age, however, that Caitlyn's issues became truly apparent in school.

We have been recommended to have our oldest, Ashton, evaluated as well and to have genetic testing done (in hopes that perhaps in the future the information gleaned may be helpful to our own family or someone else's).

Our household is going through a .. paradigm shift right now. My husband and I decided to hire out some of the housework to take some of the pressure off our schedules and stress levels, in hopes of increasing our family time (or at least making things not quite as rushed.)

We are also renovating/redesigning much of the house to accomodate more of what will work better for all the children, including the PECS schedule and similar things. We are also continuing to declutter and reorganize the entire house so that we are not trying to deal with so much stuff in the middle of so much "stuff".

If you or anyone you know would be willing to design a new blog template, please let me know.

Very positive news, Caitlyn made A/B honor roll again this 6 weeks. We are very proud of her!

PECS is working wonderfully!

We've done a trial for two mornings in a row using our morning visual schedules. Everyone has one, including dear husband and I (this also lets the kids know where to find us at a given time).

In two days we have gone from constant chaos in the mornings and lateness to a mom's dream!

We're up at 6am (according to the schedule) but haven't acclimated yet and have accidentally been sleeping till 6:30. The PECS are still working though and everyone has been on time or early to work/school.

When we all leave, the following chores are already one:

1. Everyone has eaten a hot breakfast and the dishes are washing in the dishwasher
2. Table and counters have been cleaned off
3. One load of laundry has been washed and is in the dryer
4. ALL beds are made
5. ALL dirty clothes are downstairs
6. Everyone has their hair brushed and teeth brushed
7. DS and I have had our showers (the girls and DH wash hair at night)

There has yet to be any major drama or meltdowns. Everyone knows what is expected of them. I'm really not having the online time in the mornings that I'd gotten used to, but I can either get up earlier to enjoy that or really, I'm doing fine without it.

I get to come home to a house that is fairly clean and not too cluttered, which has me less stressed and means I will be able to get to the deeper-cleaning things that were taking up a lot of our evening and weekend time before people get home from work/school. The kids do have some afternoon chores, but very few. (Summer will bring more in terms of yard work, but there won't be 8 hours gone to school to balance that.)

I had them all laminated at the teacher's supply today and told them to expect me back frequently :) At 50 cents per foot heat laminated (and that's 36" WIDE!) it's a bargain.

20% off and free shipping on Chewelry + free 30 day PECS program access

Mayer-Johnson is offering free trials of some awesome software right now, including BoardMakerStudio, BoardMaker Classic Family, and BoardMaker Player. This is a very valuable *full use* trial valid for 30 days. You are able to save and print during the trial.

So far, I have made morning schedules for each of the kids and several sequencing boards for things like "How to Clean Your Room" and "How to Use the Bathroom". You can either make solid sheets to have laminated, or there are many different templates that will allow the laminated sheets to be cut into squares that will use the velcro coins to move around onto other sheets.

What a PECS schedule may look like:

My child is verbal, but there is a ton of material available in the software to assist with non-verbal children and storyboarding. The possibilities are almost endless. How many things can you create in 30 days? Of course, if you'll be relying on the software frequently, please purchase it. The developers have done a wonderful job in including many customizable options.

 What an "I want" board may look like for a non-verbal child:

As a bonus, Mayer Johnson is now carrying the Kids' Companion Chewelry that we love so much! The lanyards are available in 18" and 20" length necklaces, and also as clip ons for clothing. Many of the lanyards are now available in an organic material.

Until March 14th, you can use code TWENTY11 to receive 20% off and FREE SHIPPING on your order of $100 or more. That's amazing!

I really suggest you check it out, if you can. Do be warned, the software is a large program and probably will not run on a netbook or older computer without a lot of RAM.

Disclosure: Not I, nor anyone in my family, is receiving any monetary compensation, goods, kickbacks, or other proceeds from Mayer Johnson for "pimping" their site or any other reason. I just want to share the awesome deals that I come across since so many of the therapuetic tools can break the bank for us and our kids.

First week back at school

I really don't understand what the school is expecting of Caitlyn, or of me. I feel like even though she may have the correct "label", no one there still understands that she is a child with autism who presents particular difficulty with things they take for granted with NT kids.

After three years of evaluations where they minimized her trouble with transitions, I received an email griping at me about the difficulty she has coming back to school after a break. Yes, people, this is what I have been telling you. She might be able to handle minor transitions relatively easily - going from a reading assignment to group work - but larger transitions for her are very hard when they involve her *entire routine*.

I'm also very upset - and angry - that they continue to use language like her being "belligerent" or not doing something "because she doesn't want to."

Very rarely is that ever the reason behind her reaction of shutting down. Even this morning, which resulted in a horrible meltdown making her late for school again (wow, I'm sure truancy court will be fun) it wasn't due to her not wanting to go to school. There was a paper I'd forgotten to sign, and she escalated super quickly into gibberish that I couldn't understand. The reason? MeanTeacher keeps threatening her with the loss of recess if she doesn't bring things back. She completely shut down out of terror for losing reccess - for something that was not HER fault! I forgot to sign the paper, that is on me! She should not be punished for that.

In a very bad mood this morning. I keep hoping there is a light at the end of the tunnel but it's escaping me right now.

On the one hand I cannot wait for her to be done with the staff at this elementary school in a few months; on the other hand I'm worried about her transition to middle school and the same or different problems we may encounter there.

I wish for a money tree to send her to a school that can really help her succeed, but everything I've found only offers partial scholarships that would still not let us afford the adjusted tuition.

Happy New Year

Haven't had anything to report since the holidays began with a madness all their own. I hope everyone had a great holiday and that this year brings progress for us and for you!