Friday, April 30, 2010

iNSD Grab Bag by Becca at ScrapMatters!

Becca has an incredible grab bag available at ScrapMatters in honor of interNational Scrapbooking Day. Trust me, this is a great deal! She has created four completely new products and they are available at an amazingly low price until May 5 only. Inside the bag you will find: one kit almost too big to be a mini - with 7 papers and 34 elements, 4 12x12 templates (layered files and pngs), 5 text paths (for PSE and PS), and a pair of retro alphas. This will only be available for a few days before its broken up, so what are you waiting for?!?

iNSD Grab Bag

My Layout

Thanks for looking!

Wednesday, April 28, 2010

Way Back Wednesday

I got the most incredible email from somebody on Facebook recently... one of those "isn't it a small world" moments. This mom has a three-year old daughter with complex issues and she was researching PDD-NOS. She came across my YouTube videos (which is too cool! we show up in Google search results for PDD-NOS!) and watched Living with PDD-NOS: A Trip to the Park. She said it reminded her so much of her own daughter, just an older version. She followed the link to my blog here (hi, Nicole!) and realized I looked familiar. We have actually talked before a couple of years ago when I was running a fundraiser for Brigid who is diagnosed with MELAS, a degnerative mitochondrial disease. Come to find out, this mom who wrote to me also lives in the same city as me! I can't wait to get to know her better and be a support to her.

Anyway, this brought back some old memories for me. I remember when Anna was 2-3 and being desperate for information, hungry to talk to parents with older children with similar issues, and not finding many parents out there. At that time, I was an extremely active member of iVillage's Child Hypotonia message board. I thought it might be useful to look some of my old posts and share them on Wednesdays as a new feature... Way Back Wednesday! I'm also going to add a bit of commentary and maybe some old pictures too. It could help moms with younger kids know they aren't alone and also show where Anna was then compared to now.

I found this post from December of 2002. Anna was 21 months old. At that time, she had some global developmental delays (including speech, some physical stuff, and social skills) and hypotonia. We did not yet know about the PDD-NOS and she didn't start having seizures until she was 3.5.


Hi everybody... I've been gone for awhile, here's an update on Anna...

My last final exam is tonight... YEA! What a tough semester this has been. I've been lurking on the board, but have been too busy studying to post anything lately. It sounds like everyone is doing pretty good and getting ready for the holidays. I should get an A in both Pharmacology and Microbiology. Woo-hoo! Now I can relax and concentrate on Christmas. (BTW, my older daugher, Jenny, turned 11 last week. Wow, how the heck did that happen???)

We made a family decision a few weeks ago that I will be taking a long break from school to focus on Anna. We all agreed that putting her in daycare will not help her flourish and besides it would break all of our hearts. I'm not sure how long I'll break from school, maybe until she starts kindergarten in the fall of 2006. If she starts catching up and things look good for her to go to preschool, the plan may change. In the meantime, I'm going to focus on "home-schooling" her, being her full-time OT, ST, and teacher. I'm going to enroll her in a Gymboree class for gross motor development and socialization. I'm going to take her out more, expose her to more kids (and probably more colds-LOL), and try, try, try to help her catch up a little.

In the last couple of months, Anna has started babbling lots more, and it almost sounds like jargon talk. She has finally started making the "ma-ma" sound, though it comes out like "maaaaa" -- hey I'm counting it as mama! She's picked up a couple of more signs, like milk and dog, so her total signs are up to 15 or so. Her foot isn't turning in quite as bad as it was before, though when she's tired, in it goes and down she falls (this morning, she fell twice). She's still not eating much in the way of solid food, but she's taking a bottle with Pediasure, formula, or milk with no problem. The whole sleep issue is still atrocious. She's up anywhere from 1-3 times a night, but she doesn't always want a bottle each time. This last week, she has started crying out in pain (or what sounds like it) and is nearly inconsolable for several minutes. It's very sad and I'm not sure what's going on or how to help her. She only does it once and it's usually early, 1-2 hours after she's gone to sleep. Ugh. Her daytime schedule is still really erratic too. Sometimes she takes 2 naps a day, sometimes just 1. It depends on how early she gets up for the day (anywhere from 5:45-7:30). I'm so much looking forward to not having to study when she's sleeping... I see a lot more naps in my future. :)

We're still waiting on the results from her genetic tests. The FISH for Angelman's came back negative, which we figured since she doesn't have seizures or hypopigmentation. Once we get the results from the other tests, we may go ahead with the DNA methylation study for Angelman's... a lot of her symptoms fit the gene mutation version of the syndrome. I'll let you know. Well, this turned into a novel. Sorry! I'll be a better friend in this community again now that I'm done with school. I love you guys and thanks for all your support!!!

Holly and Anna, 21 months, hypotonia, global delays, no dx.


So interesting to go back and read that! We did proceed with the DNA methylation study for Angelman Syndrome and it was negative. I was taking my pre-requisites to apply to nursing school, I got accepted, then deferred and declined in order to focus on Anna. I had forgotten that she still took a bottle (in fact, Anna stayed on the bottle until well past her second birthday) and that Pediasure was her main source of caloric intake. She was only 21 pounds at 21 months. Oy, those sleepless nights! Anna slept like a newborn, up several times a night, until she was three or so? Here are a few pictures of her from that age:

She has always loved to dance! Here we were at a performance of Jenny's... Jen used to take a sign language class (so that she could help teach Anna sign language and communicate with her as well as others) and the class would perform several times each semester.

At Christmas, opening a musical present. You can see that she is initially scared of the bongo toy as she is reaching up behind her to grab at Daddy. She still grabs us when she's scared today.

Another musical toy, another grab at Nana.

She grew to love this Mozart music cube!

Thanks for accompanying me on my journey to the past! I'm looking forward to another post like this next Wednesday.

Monday, April 26, 2010

Where do you start?

Because I've chosen to make our story public, and especially because of the PDD-NOS videos I made of Anna on YouTube, I get a lot of emails from other parents who have questions or want to say thank you (you're welcome, btw). Recently, a woman contacted me about a little girl she is adopting from another country that has microcephaly (basically this means a small head circumference... Anna's head circumference fell off the chart at 6 months of age and hasn't been back on since), cerebral palsy and other issues. She is trying to find out as much as possible about the potential challenges of parenting a child with special needs and is reaching out to other parents for support. I was so honored to be contacted and wrote up some initial advice for her specific to cognitive challenges and thought it might be useful to share here. I wish her the best of luck in her adoption and know she will be blessed beyond measure for opening her heart and home to this special little girl.

Let's see, a few things come to mind that you should do when parenting a child with a cognitive disability. First, contact your state- or county-run program of services for mental health and mental retardation (MHMR). We live in Texas and ours is funded through the state and run by the county. They recently changed their name from MHMR to Integral Care to keep up with the (thankfully) progressive movement to ban the "R" word. We have decades-long wait lists for services so the sooner you can get your child signed up, the better. We first took Anna to MHMR when she was five; she was given some IQ tests to verify eligibility and we were assigned a caseworker. She meets with us monthly. We get community service and respite hours where networked providers can come to our home and work with Anna on specific goals... anything from eating in a restaurant, to academic goals, to self care, to a break for us. There have been a lot of changes in services lately and we've lost quite a bit of hours. Luckily my mom is a huge support and has contracted with the state to be a network provider so she is our respite person (and she lives next door!). That is a very good thing for continuity and convenience. Don't hesitate to ask family for additional support.

Up until age 3, each state offers early intervention programs to help with speech therapy, occupational and physical therapy, social skills, and academic skills. Contact your local ECI (early childhood intervention) office to schedule an intake as soon as you as you have concerns. They will get you set up with home visits to start on some goals. If you have good insurance, you should also get private ST, PT, and/or OT. If your child has sensory integration dysfunction, they can get specialized therapy with an OT to help with that. Until your child starts school, you can really make an impact with therapy.

As soon as your child is 3, contact your local school district to see if they offer a PPCD program (preschool program for children with disabilities). Between the ages of 3-5, the school district will take over where ECI leaves off... continuing therapy and placing your child in a preschool program geared to help maximize potential. You'll soon become familiar with the IEP (individualized education program); the IEP will dictate academic and social goals for the school district to work on from age 5 on.

I also encourage you to join a support board. iVillage is where I got my start and I met the most incredible group of mothers whose children have similar issues. I started with a child hypotonia board, added developmental delays, and finally added the seizure support board after Anna's issue got more complex. This group of women I've known since Anna was 15 months old and she is now 9. We actually meet once a year in person for a retreat without husbands or children. It's so nice to be with other moms who "get" it.

I have lots of resources, so if you need more information or know any parents who may be looking for information, please don't hesitate to contact me. My email is Good luck to all of my sisters in motherhood parenting children with special needs.


Friday, April 23, 2010

New releases today from By Becca and AnnaBV Designs!

I'm so excited! Today I'm going on a field trip with my son's kindergarten class! Since Julian was killed, I've been taking every opportunity to grab life with my family... and consequently, I signed up as a volunteer for every field trip from now until the end of the year. I am so going to enjoy spending some extra time with Dominic. Plus this should give me lots of great photo ops!

New from By Becca today at ScrapMatters is this gorgeous, lush garden kit called, Silver Bells and Cockleshells. It is truly stunning and one of her best kits ever. I'm definitely going to be scrapping another page with this kit within the week. There is also a coordinating wordart pack that is equally beautiful.

Silver Bells and Cockleshells

Silver Bells and Cockleshells Wordart

My Layout

AnnaBV Designs is releasing It's a Boy's World today at ScrapOrchard. This kit is stuffed with boy goodies and is so versatile. She has a coordinating alpha, quickpages, and an add-on! This is definitely a must-have for your stash.

It's a Boy's World

It's a Boy's World Add-on

It's a Boy's World Alpha

It's a Boy's World Quickpages

My Layout

Thanks for looking!

Thursday, April 22, 2010

Congrats to Dominic!

My sweet, smart, and charming boy has been accepted into the Talented and Gifted Program (TAG) for first grade! The TAG team did testing early at the beginning of the year and he tested as gifted in language arts AND math!!! Woohoo! WTG, little man! I am so stinkin' proud of him!


Wednesday, April 21, 2010

A better day

I don't want to get my hopes up after just one dose of Abilify, but Anna had a great day at school today! I got an email this morning saying that her morning was going great. Then when I picked up the kids this afternoon, her teacher gave me a thumbs up and said it was a fantastic day. I burst into tears and sobbed on her shoulder. The relief I felt is like nothing I can explain. Day after day it's been awful, I can't imagine what it's been like being in Anna's head and body. She also wasn't as hungry all day, that would be a very nice side effect for her right now.

Thanks so much for all of your suppoert and prayers. I have truly been moved by your love.


Tuesday, April 20, 2010

Anna update... endo, behavior, and more

Well... yesterday was the worst day yet at school. The principal called me just as I was leaving to pick up the kids and they'd had Anna in room 300 (their equivalent to in-school suspension) since 1:30 or so. I can't even bear to write all the things she did. Let's just say that this child has no impulse control at this time. She knows right from wrong, she knows that she is not supposed to do these things, yet she cannot stop. She is immediately remorseful and sorry. We are now in week three of this behavior. We are having an emergency ARD on Thursday to institute a Behavior Intervention Plan. Yesterday, Anna got a pink slip... a discipline referral which will go into her record. What worries me most is the longterm social impact of her friends witnessing this... will she ever have friends now?

We saw the endo last week for our follow-up to the MRI, ultrasound, and blood work that was done in February. Her MRI was normal, the ultrasound showed that her uterus and ovaries have started maturing for puberty but menstruation is not imminent. Since she just turned nine, we're not going to stop the premature puberty. Compared to her peers, she is much bigger, especially since she repeated kindergarten and is a year older than them. They haven't seemed to notice though, or just don't care.

Her blood work showed some abnormalities. Her prolactin levels were very elevated and that can be attributed to being on Risperdal. Her thyroid levels were also elevated, so they want to repeat those next month and scan her thyroid gland to see if it is undersized or in an unusual location. Her weight held steady so the dietary changes I made at the beginning of the year are working! There were some other minor things but overall it appears that Risperdal has caused her body to grow too quickly, caused some hormonal problems, and is now not effective anymore.

After I got off the phone yesterday with the principal, I called the child psychiatrist's office back that I'd contacted last week... begging the office manager to have the doctor call me. I had written a long email on Friday going through Anna's history, her current issues, and what we are looking for. He only accepts new patients on a case-by-case basis and of course, doesn't take insurance. Sigh. I like him though... he treats Jenny for her depression and he is willing to look outside of Western medicine to see the whole person, not just throw drugs at them. He called me and said he would take Anna's case. Whew! He wants to talk with Anna's neuro since she is so complicated.

I then talked with Anna's neuro via email (I love that he allows this!). He agrees that the Risperdal has stopped working and is going to transition her immediately to Abilify. The side effects should not cause weight gain or an increase in prolactin though I did read that insomnia is common. It's been many years since Anna hasn't slept (the first five years of her life, sleep was elusive, very, very elusive)... hopefully it won't be bad. So we have a plan! YES! New med, BIP, psych... I hope within a week or so we have our little girl back. If this doesn't work, I'm afraid I'll have to pull her out of school. I can homeschool her if I have to but that won't help her learn how to navigate the real world, deal with sensory input, and make progress socially. Isn't it funny that the academics are secondary to what our school goals are for her?

I still need to schedule the ortho appointment to look at the kyphoscoliosis, the cardio appoinment for the echo of her heart, and the thyroid scan to look at her gland. I also need to call the geneticist and see if the Fragile X and fibrillin test results are back. Right now, we're in survival mode and it's one thing at a time. Oh and I almost forgot, Anna's not hearing well. Even the school has noticed that she can't hear, we're having to repeat everything we say and talk in a loud voice for her to hear us... so I have a hearing test and ENT appointment scheduled in a couple of weeks.



Wednesday, April 14, 2010

No motivation...

... to do anything.

(I've had this window open all day... I keep adding and deleting to this post. Wondering if I should keep it in draft or publish it. It is very personal. But writing and sharing is how I process, so if you do end up reading this, thank you.)

I don't want to make siggies or layouts. I don't want to exercise or eat right. I don't want to tackle my to-do list. I have a mile-long list of appointments to make for Anna, my sink is full of dirty dishes, and I have someone who is waiting on me for a paid request.

I don't know if you saw my Facebook this weekend, but a little boy was killed in our neighborhood this weekend. He was a kindergartner at Dominic's school and the boy's stepsister is in Dominic's class. His little body was dumped a few blocks from our house like a bag of trash and I'm completely tortured by it and can't stop thinking about him. (I may share more about "mind torture"... it is something that I struggle with a lot, especially at night... but that subject can be another post at another time.)

His name was Julian and he was 5 years old, just one week younger than Dominic. The funeral is tomorrow.

Julian was staying with his father's girlfriend, his stepsister (also age 5), and his 7-month old half-brother. The father says he hadn't seen Julian in almost a week. And the mom hadn't seen her son in a month. There isn't an official cause of death yet and the police feel that Julian knew his killer. Right now, they have no named suspects. The dad has a criminal history and he's only 21 years old. When Julian was a baby, CPS was called and they cited neglectful supervision after he was scratched when his mom and dad were arguing.

I keep thinking about this little boy, not seeing his parents before he died. He wasn't at school Thursday or Friday. The father's girlfriend woke up Saturday morning at 5:30, found Julian missing and the front door unlocked. His body was discovered at 10:15 a.m. What happened to him? The police say the girlfriend is not a suspect. CPS took her other children (the stepsister who is in Dominic's class and a baby boy that is the dad's and hers together). What about the stepsister? Her stepbrother dies and she's taken away from her mom? She's not in school, I wonder where she is and how she's doing.

Since Dominic is sick, he slept with me last night. I kept waking up with my heart racing, sitting bolt upright and studying my son. Do you ever notice how small children seem when they sleep? Dominic seemed so tiny and fragile. I kept touching him all night, running my hands over his head, feeling his little bones. I can't imagine someone hurting a child, I can't. My mind is torturing me. I haven't slept well since we heard about Julian.

My heart goes out to his family. I hope none of them are involved in this tragedy. I hope we get answers. As a community, we are a very caring and involved presence in our children's lives. It affects everyone here. I guess I needed to share, maybe it will help my mind to stop this endless circling.


Friday, April 9, 2010

On Wings of Dreams by AnnaBV Designs

On sale today at ScrapOrchard, AnnaBV Designs is releasing her newest kit, On Wings of Dreams. It's filled with gorgeous, rich colors and beautiful elements for scrapping those sleepy-time pictures. She has also created a set of four quickpages and some coordinating wordart.

On Wings of Dreams

On Wings of Dreams Quickpages

On Wings of Dreams Wordart

My Layout

Thanks for looking!

Thursday, April 8, 2010

Thoughtful Thursday: bare feet and administrators

Last week, Jenny shared with me an event that she was very excited about... "One Day Without Shoes 2010" sponsored by TOMS. Today, Thursday, April 8th, is a day to go without shoes to "raise awareness about the impact a simple pair of shoes can have on a child’s life." This is a global event and is present on Facebook and Twitter as well as through the TOMS website, and Jenny was so moved by this simple act that she invited her friends at school to participate in not wearing shoes today.

Please take a few minutes to read about the event and why it's important...
"One Day Without Shoes 2010".

I understand that being a school administrator these days is a difficult job. You're not allowed to use common sense (having Advil is considered having drugs) and you have to follow so many silly rules. There are liability issues too, I'm sure. Jenny called me with great disappointment in her voice this morning saying that the school administrators were not allowing the kids to go barefoot at school today in support of this event. Kids caught barefoot would be given a referral and it would be put on their record. So I took Jenny some shoes.

Wouldn't it be refreshing if just once someone in charge took a stand and said, "Let's all take off our shoes!" followed by a dramatic flipping off of heels across the room? No, we must condition our forward-thinking children to be cattle and follow the herd. You mustn't break the rules, you mustn't question authority. It's just a frustrating example of the condition of our society. There isn't even any wiggle room for a negotiated happy medium such as going barefoot during class but wearing shoes while walking in between classes. Oy vay.

I'm still proud of my sweet Jenny for making a statement and attempting to raise awareness for something we all take for granted. Do you know that some of her peers were so derisive of her support that they brought two pairs of shoes to school today to counteract her statement? There is so much wrong with that I don't even know where to start.

Sunday, April 4, 2010

Rough week

Thursday afternoon, the phone rings. "Hello, this Holly," I answer. "Hi, Mrs. Thomspon, it's Mrs. C, the assistant principal. Anna has had another really rough day and we are required to report to you what has happened." My stomach sinks, and I feel deflated.

Again in math resource, a meltdown. It started with Anna tapping some blocks on a table. It was disrupting the small group. The teacher attempts to redirect reminding Anna that the manipulatives are used as a tool not a toy. She continued to tap the blocks then started banging them. The teacher warns Anna, then she just escalates. The teacher had to removed the children from the room (again), call for help (again), and by the time Mrs. C got there, she had... and I quote... "destroyed the room."

I exploded. "Destroyed the room? That is very strong language. What exactly do you mean by destroyed the room?" I could feel my pulse beating in my throat. Well, she backpedaled, no property was permanently damaged. But any item within her reach was thrown. She had even upended a table and chairs. I was horrified. First that my usually sweet little girl was this enraged and second that the teacher had been unable to prevent this level of destruction and rage. I felt like saying, "WTF???"

I got angry. I admit it, I was mad and embarrassed and wanting to blame someone. So I first got angry with the teacher. Maybe she wasn't recognizing Anna's triggers and intervening in time. Historically, this particular class and this particular teacher have been a problem for Anna. She has a behavior chart that follows her around throughout the day; she can earn up to 3 apples per subject and if she gets 20 or more apples at the end of the day, she gets to choose a prize from the prize box. Looking over this chart for the year, you can see that Anna has good days, earning 3 apples in all subjects except math. So it makes you wonder.

As I continued to talk with Mrs. C, I also mentioned that at Anna's ARD last month, math was the only subject where Anna did not make any signficant progress. This is definitely an academic area that is extremely challenging for her. That got me thinking... maybe it's the subject, not the teacher. Maybe it wouldn't matter who was teaching math to Anna, she would struggle with it. If something is difficult to grasp, it would be hard to stay motivated to perform in that subject.

Feeling a little chagrined, I mentioned this thought to Mrs. C. I offered to come observe Anna in math to see if I could spot anything that could be done differently. But Mrs. C pointed out that all week last week, Anna struggled in all areas, not just math... math was just the tipping point. We did see similar behavior at home. She would get fixated on wanting something unreasonable, we'd say no, she's get angry calling us stupid, throwing things, being completely oppositional. She refused to listen, go to timeout, do anything we asked, etc. She even hit me on Friday. She is in crisis. She is crying for help.

I called the endo's office Thursday after getting off the phone with the school. I finally got a few answers about Anna's blood work but no real answers. Her TSH is elevated, her prolactin is elevated. Her abdominal ultrasound showed her to be in pre-puberty. They want to repeat some labs next week then we see the endo on 4/13. I don't think her hormones and body chemistry could be causing these major behavioral incidents. We talked briefly about the Risperdal... should her dose go up? Is she overmedicated with the combination of that and the Lexapro? Is she actually bipolar like we've been wondering since she was 3? Have these been bipolar mood swings and rapid cycling? In the car on the way home from school, Anna was raging at me because she wanted to see a girl in her class. I had to pull over and put her in the back row of the van because she was throwing things at me while I was driving and kicking the back of my seat hard enough to make me jerk. I stayed totally calm and dispassionate while I moved her. I ignored her. Within 10 minutes, she was back and normal. ???

(I have to also mention that Thursday's folder brought TWO notes home for Dominic for bad behavior, both requiring student and parent signature to review expectations. Sigh.)

Then after those two phone calls, the math teacher calls. She is lovely. Concerned, appropriately worried, and wanting our input. The usual strategies are not working to help Anna. (Yeah, we can relate... we're experiencing that at home as well.) I feel guilty for blaming her. It's hard to trust that the teachers will like Anna when she is being so hard to like. I want to protect her. I also feel embarrassed by her behavior and feel it's a reflection of my parenting. I want to explain away her behavior, to have it make sense. But I also want to hold her accountable. In the end, it doesn't matter what is causing this acting out... it is unacceptable and cannot be tolerated.

This weekend, Curtis and I talked a lot about Anna. Is she being bratty and can control her escalating behaviors? Is she out of control? How do we hold her accountable? We kept with consistency... she lost privileges, she went to timeout, we praised good behavior, etc. It is so hard sometimes, especially when we don't know what is causing these dramatic mood swings. Everyone on Anna's team at school is worried. Sometimes these shifts precede a seizure or cluster of seizures. Is she neurologically off? Is it medication related? Is it bipolar? Is it hormones? Frustration? Should she see a psychiatrist? Is it that Anna and I moved back in a month ago and she is having a hard time with that? A combination of these? WHAT???

There are no answers. No one knows. No one knows what she has or how to best to treat her. We just deal with each symptom that is screaming for priority at the moment. I hope we are doing right by her.


Thursday, April 1, 2010

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