PWS parents only - Apraxia Links

Kaufman materials review:
http://testyyettrying.blogspot.com/2011/06/apraxia-therapy-materials-kaufman.html

Download/Print FREE speech articulation materials:
http://testyyettrying.blogspot.com/p/downloadprint-free-speech-articulation.html

DIY Apraxia cards:
http://erikalapean.blogspot.com/2013/02/diy-kaufman-apraxia-cards.html

More DIY Apraxia cards:
http://jakes-journey-apraxia.com/2012/05/30/diy-apraxia-flash-cards/

Speech Praxis Kit  NOTE!!! I have not tried this site yet and not sure it works or is even legitimate.  But I'm posting it so I can remember to check it out.
http://www.gobookee.net/kaufman-speech-praxis-kit-1/

Stages of language and resource/lesson plans
Prentke Romich

Bundle of Energy

I took these videos the night Rafe left for deployment.  We sat around the fire all day escaping from the cold and wet rain outside. Looking at Olivia running around made me think of how much I wished I had seen a video like this when she was born.  I could not have imagined at that time how much she would be able to do.  Not only was she born with Prader-Willi Syndrome, but the additional birth trauma left her so motionless for so long that it was a celebration if she just turned her own head.  Now sometimes I can't catch her if she decides to run around the "loop" of the kitchen/dining room/livingroom/hall of the house!  

"Is it the Prada Willi?"

There is a question that circulates in my house every so often.  It's said by all of us, in many different ways, and every time I cringe.

Sometimes when I explain to Amelia why she needs to eat her ice cream in the garage with Grandpa instead of in the house, she says "It's because of the Prada Willi, right Mama?"

Sometimes when Olivia is climbing my legs while I'm cooking because she's so hungry and no one else is at home to watch her... and Rafe walks in the door and sees her, asking with anguish "Do you think this is the start of it?  Is this the Prader Willi kicking in?"

Sometimes when she is squealing at the top of her voice at the table because she wants something more or different to eat than Amelia, she'll ask "Is it the Prada Willi?"

Sometimes when she screams at transitions and I have to explain to others that she needs to be able to say "bye bye" and have time to process; and that yelling and spanking won't help, I say, "It's the Prader-Willi"

And then sometimes, like tonight, I watch her cry piteously and beat her stomach over and over.  I ask myself, "Is this Prader-Willi?"

I hate it every time.  I hate it most of all for sweet Olivia, who doesn't understand why someone she loves won't feed her.

It takes a village... to raise a special needs parent

Three years ago today, about 20 minutes ago, my youngest daughter was born.  Some of her story is here and here.  We've recently (in the last few weeks) moved from Parris Island to Camp Lejeune.  I've been doing a lot of reflecting on all that occurred during our time there.  I often think of it as "Before Olivia" and "After Olivia".  Anyone that has gone through any type of intensely emotional or traumatic event knows what that feels like.  There is a split second when everything changes and nothing, absolutely nothing, is ever the same again.

I spent most of my time taking care of Olivia that first year.  Her issues were much more severe than most children that had Prader-Willi Syndrome; and as a family we also faced additional issues because of my husband's back to back deployments and lengthy absences from the family for training and other things.  The first few months, I literally had 15 minutes free out of every 3 hours where I wasn't either caring for her or doing something directly related to her care.  I pumped breast milk for the first year of her life... 45 minutes every 3 hours.  I can not tell you how happy I was to end that, yet how satisfied I was that I did it.  She needed it to help build her immune system.  Then there were the feedings on gtubes, the special positioning, the burping, the sitting up afterwards in order to avoid giving more medicine than she was already taking in and much more.  It was exhausting.  And how was I to shower?  Talk to a friend?  Make dinner for my family?  Clean the house?  Tell my family what was happening? Most importantly, how was I to care for Amelia - whose world just crashed.  It had been the Mommy and Me show for three years; Daddy was gone most of the time and we were partners in crime.  All of a sudden I was taken away from her.  How could I do my job caring for Olivia with doctor appointments, evaluations, therapy, etc and yet still have time for Amelia?

The answer was... I didn't.  Not alone, anyway.  I have been looking back and thanking God over and over again for the blessings he gave me through the people who showed up to help our family get through this time.  I want to name them, but I'm so afraid in my weariness tonight (Rafe is gone yet again for deployment training) that I will forget someone.  So many people stepped up to the plate to offer to help; and not just offer, but to tell me specifically the ways they would/could help that I would have never thought to ask.  First and foremost, my next door neighbor Lori Fisher.  We were part of a group of friends who jokingly called themselves the "3 Lori's and a Judy".. myself, Lori Kline, Lori F and Judy.  These women were my friends, my mentors and my spiritual advisers.  I could not have asked for a stronger group of Christian women to be surrounded by during this time.  When I think about that time, I realize that never in my life have I had such experienced and wise mature Christian women around me so closely as I had during that time.  I believe God placed them there for just such a moment.  They brought me meals, helped me organize the same space again and again when I was too weary and overwhelmed to do it, talked to me, counseled me, prayed with me, ran errands for me... there was nothing that I couldn't count on them to do.  They included Amelia as much as they could.  More importantly, Lori F came every week at an appointed time for over a year to sit with and hold Olivia because I just couldn't do one.more.thing.  I slept, showered and I can't even remember what else I did. Lori was a hospice nurse, and as Olivia grew and was able to move more, she listened to the therapists and did therapy with her so I could rest.

Pam Rentz, a Stephen minister from my church did much the same thing.  She came and loved on both Amelia and Olivia for over a year at an appointed time weekly.  Meghan, a complete stranger when I met her, but sent to me on a day when everyone in the house was so sick but Olivia and I was at my wits end trying to keep her healthy, became a lovely friend and is now a pediatric physical therapist.  She too came and watched Olivia at a set time each week.  Without these mainstays in my life, I don't know how I would have had the energy or strength to care for anyone else, including myself.  It was the most emotionally exhausting and grueling time in my life.

In addition to those amazing women, there was another PWS mom, Janet G, who literally sent me emails daily forwarded from a Yahoo support group because my brain was so crispy that I couldn't figure out how to join on my own or some other reason I since can't remember.  It probably sounded kooky to her at the time but she did it and without complaint when I asked.  She called and checked on me periodically.

There was my EFMP case manager, Amy H. who held my hand and told me step by step what to file, what to ask for, what forms to fill out and what to say when filling them out.  I asked her the same question over and over again because I couldn't think straight at the time.  The programs the EFMP office offered helped teach me my rights as an advocate and parent, and how to manage this new life.  I'm still learning all the time.

I was later diagnosed with Birth Trauma PTSD, something I never even knew existed.  Without these women I don't know how we would have survived as a family.

The two therapists we've gone to - one for me and one for us as a family to recover from these three years.

My parents came to live with us, each of them taking turns staying at our house and helping with dinner, time with Amelia, housework and therapies.  Numerous other friends and neighbors helped out with meals, friendship, support.  People from my church also supported me in both tangible and intangible ways as well.   The pastor who came to the hospital and grieved with me comforted me in that shared moment more than any words of prayer could ever have done.

The greater PWS community online... answering questions, letting me vent, celebrating Olivia's successes as if those achievements were theirs, giving me advice, teaching me how to react to situations... I can't imagine going through this rare syndrome alone.  I feel empowered because of this community.

My two brothers and sister, my sisters in law and brother in law, who have never once made me feel bad for not communicating with them, keeping up my end of the conversation, or being a part of their lives while I was consumed with my own children.  My parents the same way, when they were not living with us.

The MCCS community and my neighbors at Parris Island... women in the classes who listened to my story of Olivia's birth again and again and again and AGAIN as I worked my way through my grief and anger.  For over two years, they listened... until I finally didn't need to tell the story to every single person I met.  And they never once rolled their eyes, told me to get over it, or made me feel as if they would rather be anywhere else.

Tricare... for all the problems with insurance, and military insurance, I am extremely grateful to Tricare for paying for the enormous amount of services we needed.  The army of therapists, doctors, specialists, hospital visits... without all that early intervention, Olivia (who could not move at birth) would not currently be climbing stairs and into my bed at night.  She's an amazing little fighter girl.

**Edited to add this:
Olivia's therapists... where would I be without them in her life?  And in mine?  Susan Heim, Frances Cherry, Janet Steer, Meghan Vandebergh.... through three years they were intimately involved with my family.  They worked with Olivia and with us.  Sometimes on therapies, and sometimes on life.  I remember right before I was diagnosed with Birth Trauma PTSD and was in the middle of having a mini nervous breakdown, I would sleep on the couch half watching the sessions.  They would come to my house and I would be disheveled, the house would be a mess, but they always greeted me and Olivia as if we were their most important clients and dear friends.  I sometimes would ask them the same questions over and over again as well.  At one point during this time, our speech therapist wrote a prescription or directions for me to hug and kiss Olivia x amount of times.  It was put so tactfully that she needed the physical interaction for her therapy, but I think in my heart she could see that I was feeling detached and disoriented and wanted to help steer me in the right direction.  I can never thank these women enough either... they helped take Olivia from basically a non responsive infant that could not move, cry or make any noise or indication of life to a happy, singing, playful child.  

And let's not forget the amazing NICU nurses and doctors and nurse practitioners who saved her life, cared for her, educated me and held my hand through the process.  During my NICU stay, I learned even more that nurses not only care for the patient's physical needs, but good ones also care for the emotional needs of the patient AND the family.  It's a heavy burden.  Say a prayer for your local medical team today.  They spend a lot of energy caring for strangers over and over again, often without any idea how the patients do once they leave their care.

If I've left any one out, or any category out, I'm so sorry.  I'm extraordinarily grateful for the army (or would that be battalion?!) of people who shaped me into the mom I am now.

It took a village, and it's a village that I am deeply, deeply indebted to.

Thank you with all my heart.

Lions and Tigers and Therapy, Oh My! (Part 2)

About 3 weeks ago, we started some music/brain therapy with Olivia.  I'd been asking for this for some time after reading about successes with it.  My OT did tons of research on the hows and whys of all the different types of brain and music therapy out there before deciding on one from Advanced Brain Technologies.  More information can be found here at The Listening Program. Two pages that explain a bit about how it works are here and here.  Francis (*my OT) is extremely thorough and spoke with many therapists using different styles and companies to find out what worked and what didn't.  I was also very comfortable with this one; especially once I found out how many research studies they are involved in and knowing that the military uses this program for PTSD and Wounded Warriors.  On the ABT website you can find a link to info about all the studies, past and present.

(*side note - I have no kickbacks from anything I'm going to say in regard to therapies.  I am posting the links for the PWS parents who will come here for this information so it will save time answering questions later on)


I have a set of headphones and CD's and the OT also has a set of headphones, but her music is on an Ipod.  Her headphones are also bone conduction, where mine are ones recommended by the company but without the bone conduction aspect (it was too expensive).  While the therapy itself is part of the OT session, the equipment we use at home was an out of pocket expense for us.

Frances does OT with her twice a week and uses the headphones during the session; and I use them with her every day, twice a day.

The first day we just tried to get Livi used to the headphones.  She really fought them at first, but we tried repeatedly until she became more comfortable with them on.  Once the music was on, she was entranced.  When Frances took the earphones off of her, she gave me one of her very rare, super sad faces where her mouth turns down into a perfect upside down U - an expression that I think is uniquely Prader Willi.

That evening, I happened to notice her run through the kitchen.  It took me a few seconds to realize that for a few brief seconds, she looked like a normal two year old.  She ran without the lopsided loping gait that she has momentarily before lapsing back into her normal run.  I really thought that it was just a coincidence at the time.

The next morning I saw her try to put the earphones on her own ears.  I just stood watching her for a moment try to figure out how to do it and then helped her.  She was so close to being able to coordinate it that it really surprised me. I played the music for her to listen to while I was getting the girls ready for school and making breakfast.  When it came time to take them off, she got extremely upset.  She began crying without moving or making a sound; only standing there with that upside down U and super sad face all screwed up in misery, shoulders slumped.  She ran off after that and as I put them away, I noticed she was hiding behind a huge quilt we have hanging in the hallway.  I thought she was playing at first, but when I went to pull back the quilt I saw her crying silently to herself.  It was such strange behavior for her - she's always so sunny and cheerful, especially in the mornings.

Lesson to self:   Turn the music down slowly, let the earphones sit for a minute and then remove while distracting.  The sudden change was too abrupt for her. 

It's kind of hard to describe, but as this continued over the last three weeks, I kept seeing more and more sparks and flashes of behavior that I just couldn't put down to coincidence anymore.  She is absolutely enamored with the music.  She is responding more quickly to commands; I've seen her run way more than I ever have and with more coordination; she's more involved in conversation (even though we can't understand her) and somehow she just seems to have more cognition in general.  This doesn't mean she's acting like a normal 2 year old by any means, but for her the improvements are a big deal.  They are subtle changes in some ways... the best I can describe it is that it seems like her processing power just sped up a few degrees.

So yesterday we added another wrinkle to this - I gave her a liquid supplement called Pearl's Daily B for the first time.  I personally favor this supplement as the man who sells it has it manufactured for his beautiful daughter and her unique needs.

OH.  MY.  GOODNESS.

She was on fire all day.  At the PT session (2 pm)  she was racing around with so much energy that it was commented on.   She was zooming up and down stairs, chatting and singing away, riding bikes and just generally being rambunctious.  At school they commented on how engaged she was all day.  And at home she was like the energizer bunny.  She even ran through the house several times - running flat out, using all four limbs in proper position.  I don't know if it was the B, or the therapy or both.. but it was just such an obvious change that people outside our family commented on it.

We had a weekly bible study at our house last night.  One of the men who has only been here about 3 times commented on how alive Olivia seemed and how he had never heard her talk so much before.  She was just babbling away, running up to him and hugging him and running around having fun.

At the end of the study, we were all saying our goodbyes when out of the blue we heard a very clear "BYE".   So clear and loud, in fact, that one of the women who came to the study thought it was her son saying it.  We all looked kind of astonished and looked at Livi who realized that this was a cool thing, so she kept saying it over and over again.  Typically when she speaks, her words are very slurred and she sort of whispers them or mouths them without sound.  She has said "bye" before, but it has always sounded something like a tired old Southern lady saying "bahh" with her voice dropping off at the end.  She has almost always dropped the last sounds of any word she's attempted and most of the time she literally sounds like she has marbles in her mouth while at the same time speaking gobbledygook. This time it was a loud and clear "BYE" with an emphasis on the YE.


I don't know if it's the ABT therapy, the B vitamins, or both. I've tried hard to keep a level head about the things I've seen.  At first I thought they were coincidences since I felt that surely it couldn't work that quickly, even though what I was seeing was subtle. But all these coincidences are adding up for me.   I feel like we are seeing real results - It was so notable that in the follow up email with prayer requests sent after the meeting, our fearless facilitator wrote this:  "Praise that Olivia has been responding positively to some new treatment approaches. She has shown an improvement in her development. Monday night she very clearly said bye to Janis and this has never happened before where she spoke so clearly. What a joy to see a miracle happen right before our very eyes! "

Lions and Tigers and Therapy, Oh My! (Part 1)

Because of our upcoming move, the past few weeks have been a whirlwind of thinking a lot about therapy.  Thinking about therapies available in Jacksonville; checking out therapist references and resources; visiting schools and clinics to see which setting will work best for Olivia, getting on waiting lists (3-6 months for pediatric therapy.. wow) and researching what alternative therapies are in the area we are moving to.

 In addition, because Olivia will turn 3 and age out of the EDIS system (military early intervention) immediately after our move, I'm cramming on information about IEP's, Wright's Law, FAPE, IDEA, Section 504...who knew that special needs education was as acronym ridden as the military?  I'm learning an entirely new language in a crash course.

Last, but not least, some therapies I've wanted for Olivia for a long time (swimming, hippotherapy, yoga, brain/music, ABA) are closer to becoming available to me as she is getting older and we are negotiating those possibilities as well.  In the past three weeks we've added ABT therapy, added another supplement, received approval to start 6 hours a week of ABA therapy through Butterfly Effects and found a pediatric Occupational Therapist who is also a special needs yoga instructor who will come to our house and do yoga primarily with Livi, but also the whole family.

Whew.  Are you tired yet?  I am.

Meltdown

Last night I wanted to go to a meeting held here in town about South Carolina Connections Academy - an online school similar to K-12.  I'm interested in learning about all of my options for schooling Olivia and Amelia in the future.  Rafe was going to watch the girls for me, but unfortunately he wasn't home in time for me to go without them.  What irony - the one night I go out without them turned out to be the one night he had to stay late for an all hands brief from General Amos.  Can't really walk out of that one early.

Olivia was already acting very out of character during dinner.  She threw her plate on the floor twice.  The first time I turned her high chair around to face the wall while I cleaned it up, trying to figure out how to say, "Don't throw your food" in a positive way.  It's only today that I figured out I should have said, "We keep our plates on the table when we are finished" or something similar.  Still not sure.  The second time she made a huge mess and I took her out of her high chair and told her dinner was finished.  I've never seen her so upset.  She cried and cried while I was cleaning it up.

At the meeting, she was squirming and screaming in my arms.  While normally I can put her down and she will play quietly near me, this time she was running down the aisle toward the presenter so fast that I had to run down after her - all the way to the end.  This happened 3 times during the night, because she would literally go limp and then frantically squirm out of my arms and she slipped away from me.  I was in the back of the room and finally moved to the hallway and peeked my head around the corner of the room to try and hear what she was saying after the first 10 minutes of this.  The information being presented was excellent, but I was missing so much of it that after 20 minutes, I just left with both the girls.  I did learn that if you do online school, they subcontract with special needs care providers for OT, PT.  And they do Speech Therapy over the internet, although I wasn't there long enough to find out how that worked.

It was such a frustrating evening even though it only lasted 30 minutes, and I couldn't help but think of the times to come.  No one there knew Olivia couldn't really understand like a normal 2.5 year old the concept of behaving.  I felt like a really awful mom because I kept getting dirty looks from the other parents there.  She understands (I think) some actions and consequences, but concepts are something I'm having a hard time figuring out how to teach her.  It all came so naturally to and with Amelia.  Earlier in the day I had gone to a presentation by Butterfly Effects on ABA therapy.  I think it's time for us to get involved with that so we have tools to respond appropriately to her behavior and don't accidentally reinforce it.   Yesterday I also switched her Speech to the clinical setting starting May 7.  All in all a busy day.

Surprisingly enough, Amelia told me this was "the best day ever!"  When I asked her why, she said it was because she was spending time with me.

What a week!

It's only Wednesday and for some reason it's been feeling like Friday since Tuesday.  Since Monday we've had:

Appointments for Olivia - 

2 Physical Therapy

2 Occupational Therapy

2 Speech Therapy

2 Pediatrician visits

1 Orthotics visit (it's the third in 4 weeks)

1 SNERT assessment (Special Needs Evaluation Review Team)

1 CDC paperwork review

1 EFMP visit for housing referral and rating for Olivia

Events for Amelia -

2 playdates with friends

1 Parent night for rising first graders at EC Montessori

1 Dr. visit

2 pickups from school by me

1 dinner out at Taco Bell for stars earned 

1 trip to Walmart for tissue paper(to make crafts) for stars earned

Events for me - 

1 Home group  - small group bible study in a friend's home

1 Pampered Chef party (THE highlight of my week so far)

That's not even counting the conversations I've had with Naval Hospital and insurance people this week.  We only have 4 more appointments, and a playdate this week.  I'm dropping Olivia off at the CDC and trying to actually get something done at home the last two days of this week.  I think Rafe sometimes wonders what I do all day when he comes home and the house looks pretty much the same.  I do too, and then I look at a list like this and remember why the toys are still in exactly the same place as they were when the kids got done playing with them this morning.  

Temperature Dysregulation

One of Olivia's many issues is Temperature Dysregulation.  She might grow out of it, but probably not.

Patients often have some dysregulation of temperature, in which the baseline body temperature often measures in the 96s and 97s and sometimes lower; temperatures can drop even lower during the night. Less often, temperature values at baseline run higher than normal. This is a particularly important piece of information when assessing a mitochondrial patient who is sick with infectious symptoms. An apparent "low-grade" temperature of 100°F may be dismissed by an unknowing pediatric practice as being insignificant. However, if the patient's baseline temperature runs at 96°, such an impression may represent a mistaken conclusion.  Autonomic dysregulation article here

What this means in practical terms is that yesterday her temperature ranged from 77 degrees (her feet) to 101 degrees (under her arms)...all at the same time. 

Her base temperature used to be around 96, but I've stopped checking it the last six months and no longer know what it is.  She seemed to be doing a better job regulating her temperature. 

But this past week has been doing a number on her.. she doesn't do well when her routine of sleeping and eating are disturbed; and we've been outside a lot in the growing heat.  We sleep with the house at 66 degrees at night and keep it around 70-72 in the day.  It is far easier to keep her warm than it is to keep her cool.  At night, she doesn't really move once she goes to sleep, so that heat accumulates under her body and around her and she gets really hot.  After waking up from her nap yesterday, we took temperatures because she seemed so hot on her tummy and back and they were all over the board. 

So now it's time to start packing ice packs/wet cloths/coolers everywhere we go as the weather gets warmer.  We're going to the zoo next week and it's going to be tricky to keep her cool.

CDC Success!

This morning was a bit hectic loading all of Olivia's stuff into the van (including the high chair); but well worth it in the long run.  The nurse was there when I showed up and took Olivia directly from me while I was bringing in everything.  I noticed she took her and played with her a bit, showed her a fish tank, and sat with her in the room to play with Olivia on her lap.  As nice as it was, I am assuming she did it to get a feel for what Olivia's capabilities are.  I later found out she stayed a couple of hours at the center and was there when Olivia's meds were drawn so there would be oversight. 

Susan (our cognitive therapist from EDIS) was there after lunch and checked in on Olivia and the classroom to make sure things were running smoothly.  She later called me with an update and report on how things went.

I went to go pick her up and the staff all told me how much they loved having her and what a great baby she was and to bring her back anytime... I think they were vastly relieved to find out how normal she is.  The caregivers in the room told me they hadn't expected her to be so mobile and to be able to sit up.  Not sure why they felt that way; I told them she could sit up but could not sit alone on a chair- she would fall over.  It's not that she doesn't have the muscle strength to sit on the chair - it's that she doesn't understand how to sit on a chair.  She can't keep her balance because she's not sure where her body is at in space on a chair yet.

The greatest thing about the CDC today was the caregivers telling me she was repeating sounds they made and babbling a lot; and she waved "bye bye" on her own to a woman she didn't know who was leaving the room.  SHOCKING.  I am so impressed!  I talked it over with Susan and mentioned that I thought it would be a good idea to bring her there once a week for socialization and she agreed with me.  The only negative was that she didn't sleep at all.  They could not get her to lie down.

Oddly enough, when I brought her home and put her down for a nap, she only took about 1.5 hour nap.  She woke up ok, but really reacted poorly to situations in the house.  She actually got a frown on her face and cried, a real fussy cry, for about 15-20 seconds several times when she was with mom for no apparent reason.  It honestly startled the heck out of both of us, and we started checking her whole body over to figure out what was wrong.  She turned out to have an enlarged node on the back of her neck/head area.  We called the doctor and were told it was a "shoddy lymph node" and to just watch it.  I'm not even sure what that is at this point. 

All in all, a busy day.  I took Amelia to a going away luncheon with bouncy house for the woman who coordinates playdates in the neighborhood; then drove her over to Creative Stitches to finish sewing her shorts with Grandma.  After they came home we went to an Oyster Roast put on by the battalion at Elliot's Beach, complete with another bouncy house and bonfire. 

Mixed Reactions

Lately when I see videos like this, I have very mixed reactions.  The kids are cute and hilarious; but I always find myself a bit stunned at how animated and interactive they are.  Their faces are so expressive, their reaction time is so quick, and their noises are loud and specific.  It makes me sad for Olivia.

SNERT

We had our first SNERT yesterday for Olivia. 

The Marine Corps Special Needs Evaluation Review Team (SNERT) consists of qualified personnel whose goal is to make an assessment of the accommodations necessary for a special needs child to participate in Marine Corps Children, Youth and Teen Programs (CYTP) and to determine the most appropriate placement for the child. An installation’s SNERT reports to the installation commander and includes, at a minimum, the CYTP Administrator, EFMP Coordinator, medical personnel, parent(s), the child or youth when appropriate, and other applicable CYTP or community agency personnel. 
Children who require medical or educational intervention, assistance, or other accommodations are eligible for services.  This includes, but is not limited to, children with autism, asthma, allergies, hearing impairment, orthopedic impairment, developmental delays, behavioral issues, specific learning disablement, and mental, physical, or emotional challenges. Upon request for services, the SNERT will make an assessment of the accommodations necessary for a special needs child to participate and determine the most appropriate placement.  
Parents can read Marine Corps Order P1710.30E, "Marine Corps Children, Youth and Teen Programs," 24 June 2004 for more information on SNERT.

Currently with my husband deployed, my mom is my respite care provider.  She's received permission from his CO and housing to live on base with me and it has been invaluable for Olivia's care and therapy.  I think she is MUCH farther ahead than she would be otherwise because of the level of care and therapy she is receiving from both of us on a daily basis.

I want to take her out to thank her, and give us both a day of fun filled relaxation with no kids.  But.. SHE is my respite care provider.  So I looked into putting Olivia in the CDC (Child Development Center) on base for drop in care and found that I needed to do a SNERT to enroll her. 

It was a little surreal - kind of like an IEP meeting for preschoolers.  The director of the CDC was there; a representative from the EFMP office (Exceptional Family Member Program); and a nurse.  I was told that a representative from EDIS (Educational Developmental Intervention Services) would also be there, but I think she was unavailable on such short notice. 

The director interviewed me and asked me about Olivia's medical history and potential issues.  It was hard to explain what was wrong with Olivia, because while I was stating the facts, she actually does better day to day right now than it sounded.  It was sort of the feeling you get as a special needs parent when you think your child is doing great and your life has settled into "normal" right up until you go to the doctor's office and they make you fill out the questionnaire on developmental milestones - and you realize how far behind she really is.  The director sounded really anxious and nervous, and every time I told her something it seemed she worried more and more.  The CDC's have only recently begun accepting federal money for their food programs and so they have to abide by the disability inclusion laws for education.  Prior to that, they did not. 

The nurse kept trying to talk me into having Olivia taken care of at a local family provider home on base - basically a home child care business run by a mom.  There are quite a few providers on both bases available for this option. 

The EFMP director is AMAZING and she actually has seen Olivia in action.  She was there basically to observe and facilitate as needed for my rights.  She kept quiet most of the time, just listening as we went back and forth between the director and the nurse and myself.  I had to keep saying things like, "Ok, let me wrap my mind around this and make sure I understand you - You are telling me that you are uncomfortable with your ability to supply her needs and take care of her at the CDC and you want me to take her to a Family Home Provider instead" (which is illegal).  The nurse would come back with, "Well, I just think you would be happier if you took her to a Family Home Provider who could provide a more individualized level of care because there are less children in the home".   It was all very tricky and subtle how they worded things. 

I really wanted her in the CDC for several reasons, not the least of which was socialization with other children her age.  We've had to keep her seperated for so long because of health issues, I really think she needs to be around a lot of other little kids close to her age. Finally the EFMP rep stepped in and said one sentence and they sort of all fell in line and agreed to have her come to the CDC.  They want me to put her in care this Friday for a trial run while I am still close by in case anything happens they have questions about.  It's all so strange to me - they called me 3 times after I left the meeting to ask questions about her development level and kind of sounding panicky every time I gave an answer. 

Here are some of the issues they had:
Can she sit in a chair (the other kids sit in chairs and self feed)?
Can she drink from a sippy cup?
Can she have the lunch they provide?
Can she eat solids?
Can she follow their schedule?
Can she sit up?
Can she feed herself?

They really didn't give me the impression they were too thrilled with having to do the extra work it would take to have Olivia there - feed her by bottle, feed her by spoon, put her in a high chair, etc.  They actually asked me to bring my own high chair.  I am providing the food, the spoon, the milk in a thermos already mixed in bottles, the bib for her.... It sounds like this huge deal and really it's no different from having to watch an 11-12 month old.

It's official - I'm twice as stressed as everyone else...

Did you know that mothers of children with Prader-Willi Syndrome have up to twice as much stress when compared with parents of other developmentally disabled children?  In addition, parents with disabled children already report a 10% higher number of stressors then the average parent.  Not to mention a recent American Psychological Association poll that found that one-third (32%) of parents in general report that their stress levels are extreme!

This is from the Foundation for Prader Willi Research - Canada.

I heard that statistic very early on after Olivia was diagnosed with PWS.  At the time, I found it very hard to believe that a PWS parent could be more stressed than any other parent of a disabled child.  It smacked of hubris to me and I thought that either the person quoting it misheard the original information, left out a word, or just "felt" things were worse. 

I don't believe that anymore.  Although it feels kind of wrong for me to admit this - I've never been a big fan of the whole game of "my stress is worse than your stress" or "my problem is worse than your problem" or worst of all, "my husband's deployment is worse on me than your husband's deployment is on you"; I can understand a little bit of why PWS feels a little worse.  While it is not true in all cases, there are some things unique to PWS that are not encountered in any other disability that I am currently aware of. 

It's the food.  Always the food.

If you think we're a food obsessed culture now, wait until you have a food related disorder and then you will realize you can barely go even a few minutes without thinking, hearing, seeing, smelling food in some way.  Everyone is talking about food -  using food for motivation or discipline; as metaphor for hospitality, love or caring; as a tool for health or fitness; for familial or community bonding; for tradition or cultural reference; for hobby and relaxation; for business deals and entertainment; as a story-telling tool in parables and books... the list goes on. 

In our family, even before Olivia, we really limited the amount of sweets and snacks we have in the house.  I don't really buy junk food; and by this I mean cookies, chips, candy, snack crackers, cake or sweet bread mixes, etc.  It's not that we never ate those things, but they were eaten sparingly and rarely, and mostly at other people's houses.  About two years ago I started collecting all the candy that Amelia was being given at various functions and put it in a clear plastic shoebox.  Every time she received treats, she could eat one or two and the rest went into the shoebox for special occasions.  I've periodically dumped out a bunch of it in the trash and yet the box has never gone empty. 

Even though Olivia doesn't have the extreme hunger YET, I find myself constantly confronted with situations now that I find stressful because I am so much more aware of food that I never noticed before.  Today at church really brought this home to me.
We go to church and there are candy dishes everywhere, filled with peppermints.  I can't get into church without fear that my 4 year old will have a screaming fit because she sees candy and wants a piece of it.  I want to tell her no, but I created a bad habit/expectation by letting her have one piece of candy when she comes in the door so I can speak in peace to the people around me.  If it was never there at all, I would have NO problem with her whatsoever, I could still speak in peace.  It's the temptation that causes a problem for my four year old. 

Then once in church, there are donuts at the back.  They are such a treat because we never buy them, and I allow her to have one donut before we sing for praise and worship time.  She constantly asks if she can have one more but always accepts the answer is no. 

I take her to her Sunday School class, and the first class that is her age rewards the kids with a small amount of goldfish.  I don't like it, but at least it's not sugar. 

I started going earlier, and last Sunday was shocked when I went to pick her up from her new class when I found out she had a paper bag full of candy and other goodies she "earned" by answering questions.  A sack.  Maybe it was 6 things, but when you need a sack to carry the sugar, I think it's too much.  The teacher told me it was a special class and that wasn't normal.  I didn't know ahead of time that is how things worked and it never occurred to me to ask.  I forgot between last sunday and this sunday and she went again to the early class.  When it was over, she came running out with more candy for answering questions correctly.  Only two pieces this time, but .... then the inevitable questions.  Can I have it?  Now?  If not now, then when? 

It's so frustrating because we're only trying to keep her a bit healthier and away from the national average of  122 pounds of sugar eaten yearly per person.

"As little as 100 years ago, it is estimated that Americans ate around one pound of sugar a year." (Dr. Scott Olsen)  Teens eat even more sugar than adults, and we want to establish healthy habits for her very early on. 

It will be easier to stick to what is healthy than to retrain her as an adult to not eat unhealthy foods... think of your own diets and food downfalls.

So all that is only the background for what comes next. 

It's everywhere.  EVERY. WHERE.  So pretend that you have a crack cocaine addict that is attached to you with handcuffs.  You can not go anywhere without this addict by your side.  It is your job to make sure that the cocaine addict behave him or herself at all times; use proper manners; use appropriate language and social skills; have appropriate hygiene; be pleasant and fun to be around. 

Everywhere you go, someone offers you some cocaine.  You don't have the same problems with it, so you just say no.  It's left on the counter in front of you in case you change your mind.  You open a book to read a story to your companion and there are pictures of cocaine everywhere, stories with long descriptions of how wonderful cocaine is as part of the storyline or even background plot.  Listen to the radio and you will hear whole programs on cocaine.... you get the idea.  All the while your companion is expected to not indulge, to control him or herself, to behave like a normal human being with no problems. 

Only it doesn't  happen.

How do you operate as a normal family around the dinner table, laughing and talking and preparing dinner together when you have to watch like a hawk what your PWS child is doing in the kitchen?  It takes a joyful, everyday event and creates a tension and stress filled one.  Even if you have a system in place, I would imagine how guilty I would feel knowing I won't be able to feed Olivia as much as she wants to eat.  It has the potential to create eating disorders in other family members that would never have existed otherwise because of the ritual/cautions needed around food of all kinds and the tensions that result from that.

How do you go for family vacations with your extended family?  How do you stay at houses that don't have food locked up?  Will I ever be able to visit my brothers or my sisters or my parents at their house again without stress of where she is at every minute?  How do I go grocery shopping when I have to take her with me?

Most of all, how do I balance my love of cooking with my oldest daughter (4 year old Amelia) and all that we will cook together in the future in shared companionship - creating an intimacy in that area that Olivia and I will never know together - without making Olivia feel left out and left behind?

Not only do you have to control their eating habits and calories, you have to control your own and that of your family.   You can't indulge in an ice cream sunday for dessert for the whole family when your child can only have 700 calories total for the day.  In order for your child not to feel left out or a burden or unfairly penalized, everyone eats the same thing; only you have a few more calories on your plate.  The food becomes much healthier but you will leave behind a lot of old family favorites and traditions.  You can't just swing into a restaurant or fast food place when  you are running late because the caloric content is too much for your child.

In the end, I think the intense stress comes from a variable that shows up in so many unexpected places, in so many unexpected ways, and yet is essential for both physical and social life.

I don't think I explained this very well as I read over this but I'm tired and done for tonight.  And I am so tired of seeing junk food and candy EVERYWHERE.  And a whole other rant.. why do we reward kids with food anyway??? ... saved for another time.

***EDITED TO ADD:  I've had so many comments, both public and private, on this asking to link to this page. You are welcome to link to it; thank you so much.  Please let me know where you link; I love to read other's blogs.  It helps to know it's not just me that feels this way. 

Olivia's New Teeth

In November we had a developmental checkup for Olivia at the High Risk Clinic at MUSC in Charleston. Dr. Papu was one of the doctors overseeing her care when she was in the NICU, so it was nice to show Dr. Papu how far Livia has come since last year.

At that time we also had an evaluation by a pediatric dentist. Livie has 8 teeth, and 3 out of the four top ones were not completely formed. I learned that teeth are one of the last things formed in the womb and they grow in rings, like trees. When a traumatic event occurs, like a premature birth, the body puts effort into healing rather than growing. Along with the antibiotics given to her during her NICU stay, her teeth did not form properly. They looked like slivers of teeth and she was diagnosed with dental hypoplasia. You could see some of the interior of the tooth and the dentist was worried about dental caries. I was very impressed with the knowledge of the dentist at the time, and she took detailed pictures of Olivia's mouth before setting us up with a follow up appointment for today.

Traveling with Livie to a doctor's appointment is always tricky. Her primary source of nutrition is still Neosure from a bottle. She can't drink from a cup and she won't drink anything that isn't exactly the right temperature. If it is a neutral weight and temperature, it almost seems as if she can't feel it in her mouth or recognize that she needs to be eating. It takes about 45 minutes to an hour to feed her most times. Doctor's appointments away from Beaufort, even just one of them, usually takes all day to complete. It's a two hour drive, so we have to leave early enough to feed her there before the appointments so we can do the requisite waiting around in busy offices, and then feed her afterwards before the drive home. And the doctors there are excellent - they take their time with you and your child so you are often there for some time.

Olivia will always have some mouth/teeth issues. One of the presentations of PWS for her is reduced saliva. Her teeth and mouth need to be brushed often, her breath is often stinky, her saliva is thick. Her dentist mentioned that we would need to work harder on preventing cavities with her and that regardless of her future diet, she should eat (when possible) her carbohydrates first, followed by proteins and fat. Apparently this helps neutralize the sugar from the carbs and reduces the likelihood of cavities by creating a more acidic environment. So interesting! I asked her about some toothpaste I had recently picked up in KC (Tom's of Maine) because I wanted less sugar in the girls' toothpaste. She agreed that it was a good one for Olivia, and will give me some feedback on other items I purchased after I send her the labels from them. I picked up a natural mouth spray with xylitol in it - she was thumbs up on the xylitol but wanted to know more about the spray.

The dentist had recently gone to a conference on Pediatric Dentistry after meeting Olivia in November. It was encouraging to me to hear that she specifically sought out more information on the issues facing Livie. When she mentioned that she looked for PWS dental pictures on the internet but couldn't find them, I told her that she was welcome to use the pictures she kept taking of Livie's mouth in any way that would help other dentists. Next visit, I will sign consent forms for her to use Olivia's data for research or other purposes. During the conference, she asked about Biotene for babies and children (to help with salivary issues). Dr. Miller recommended it for use with Olivia, but there are no protocols for children under 12. When I called the company, they refused to even discuss possibilities with me due to FDA regulations (understandable, of course). Our dentist sought out many experts at the conference asking about this and was told there was nothing out there but it was an interesting concept. So I told her if she could figure out something that worked for Olivia, she could get rich and famous!

The conversations with the dentist were extremely informative and interesting; she really knows her stuff. They ended up giving Olivia two different treatments that resulted in her having normal looking teeth, and covering up the weak areas so the teeth don't further deteriorate. We'll go back in 3 more months for a follow up.