Wednesday, April 23, 2014

Our Special Needs Journey:Part 13 - Getting Help (Update on Julia's Eating Disorder)

I am picturing Robin Williams, in full Mrs. Doubtfire costume, running across the restaurant to perform the Heimlich on his ex-wife's sleazy boyfriend shouting "Help is on the way, Dear!"  Why in the world God's voice sounds like a cross-dressing Robin Williams I'll never know, but I am comforted by it all the same.

Monday we had diagnostic assessments for the 3 older kids at Fraser (a special needs treatment center) -- 2 hours in one location for Taylor and Dean then rushing over to a 2nd locale for Julia's appointment.  I had all 4 kids with for that 4 hour stretch, giving a fairly accurate representation of a typical day for us. :)

These guys are like THE area autism experts. It is difficult to get in to see them and even more-so to create a treatment plan and obtain services with them.  So it's fair to say I am pretty jazzed that we're in: family therapy, individual (for all 3), group & social skills, feeding therapy, and more. Guess what?! They will work with Dean to poop in the toilet! What an answer to prayer this all is!

I am so grateful to have them getting all the services they've been needing for so long - together, in one location with a team that can easily communicate with each other - even the more unique therapies - and we can financially handle this!

Oh, and I have to brag for a second: I've found some pretty amazing PCAs for the kids as well.  This is pretty new still, but to have help with the kids from people I have confidence in is a tremendous, life-changing comfort! They are each (we have 3 right now) bringing new insight and tactics - and sanity- to our lives. I really needed help to catch up on life. While I am still stressed out and overwhelmed at this very moment, I do know God is answering my prayers left and right. Help is indeed on the way (and here already).

[Here's Dean and Elijah, one of his PCAs, making a mess with homemade Moon Sand. Both these guys are pretty awesome and make me laugh all day long.]

I'm back in talk therapy after a 3 year hiatus. It is good to have some time for self-focus and care for my own mental health.  My phone rang 4 times during my 50 minute appointment yesterday - so I'm not sure therapy is an effective use of my time; we'll see. Generally investing in one's mental health is always wise. {Turns out Dean had a liquid stool in his pants at school and needed to be picked up.  I did explain to the school nurse that this is very typical for Dean - happens almost daily.  Perhaps with removing dairy from his diet this issue will decrease.} The point is, I'm getting help.

Bruce will be getting some early intervention as well.  I begin special ed classes with him in a week and I'm actually looking forward to the one-on-one time with my youngest.

The help I'm less thrilled about getting? Monday my daughter Julia went inpatient at the hospital eating disorder clinic. It was a difficult decision to make to begin with but the first 24ish hours were confusing and traumatic. We were told a week or two by her doctor and then each other staff we encountered mentioned "months" as typical. [Read more of Julia's story here.]

[This is Melrose in St. Louis Park MN - a really beautiful building!]

The purpose of inpatient for Julia is different than the typical patient. She is only 12 - and has social/emotional level of a 7-8 year old.  When all medical possibilities had been exhausted we began outpatient care at Melrose Eating Disorder clinic. I am proud of the progress she has made (she is at an all time high of 66 lbs!) but they need her to gain at least a pound a week and she has put on a pound per month.

She has a long way to go till goal weight (but I was not told what that number was).  You would not know it from this beautiful smile, but her poor little body is in danger of shutting down. Some of the damage to her body (especially her bones) due to undernourishment is not reversible. She eats - the right things and plenty of them. She is not overly active for her age (sure she fidgets a lot and loves to play Just Dance on the Wii, but she's not even in group sports).  She has sensory issues with food and swallowing but there are plenty of things she will eat that it doesn't limit her. Her Crohn's causes some weight/absorbtion issues but we were told her low weight actually negatively impacts her GI track, not the other way around.

Since so much has been done to improve her health and achieve sustainable weight gain (including VERY restricted activity) with too slow of progress, she was admitted to the hospital for intense treatment. The main goal is weight gain & stable health & vitals. Secondary goals are to work on swallowing refusal and food issues (texture/touch/temperature).  We're not even looking to learn what works long term - we're in crisis/emergency/survival mode right now. The rest will come in time.

When we arrived for orientation the nursing staff rattled off rules (um, I homeschool and am a stay at home mom, I'm not very used to such strict rules, at least not for a long time now) including "stop fidgeting, Julia. You have to stop moving and sit still."  She leaned over and fearfully (and tearfully) whispered in my ear "I can't make my body still. I tell it to stop but it won't."

They would not let her have her chewy (oral sensory need - it's a silicone/rubbery thing safe for chewing on) or weighted blanket. Despite my struggles to be assertive normally, I DID advocate for my daughters.  I demanded to speak to the Occupational Therapist and get an order for those items from her doctor. Success!

After MUCH frustration that first hour I found out they did not know she had autism, ADHD, sensory issues, or any other special qualities.  That made me pretty nervous.  I was told I needed to be at 6 of her appointments the next day AND all her meals! When I say I am busy that is an understatement. The calendar is full of important appointments.  Dean and Bruce cannot be left unattended, Dean's morning PCA is out of town this week, and I did end up trying to bring the boys and it was NOT good.

The staff continues to tell me "Julia is doing fine, we asked if she was anxious or sad and she said no." I keep telling them that she does not know how to label feelings. She is not a complainer, she aims only to please and make everyone happy. She doesn't want to be an inconvenience.  So even if she could put names to her emotions, she would not tell them she was sad, hungry, lonely, worried, tired, or hurting.

I've got some food and weight issues myself, BTW, and was noticing that I was clearly the fattest person in the entire building. Being here is a trigger for me for sure. I don't eat much during the day so I was not a fan of needing to eat with her. They said I could not bring food in and they don't order a tray for me (which would also get expensive), no one is telling me what to do. So I was there all day without eating or drinking. The goal was to have OT work with her on food issues/swallowing, so how is leaving me alone with Julia, in a special dining room separate from all the other patients, helpful?! When she didn't want to eat the nasty steamed broccoli I didn't know what to do.

She couldn't have a napkin when she asked, so she proceeded to wipe spaghetti sauce and boogers on her shirt. When I needed a tissue or to use the bathroom I had to go down 3 flights to the public restroom.  Not a big deal, unless you have a toddler with you.

When I asked why she was so tired I found out they wake patients up at 5:30. I'm thinking 7 hours of sleep is not enough for a 12 year old, but what do I know, I'm only her mother. They require, by law, she continue schooling while she is there. It'd be easier to give her a week off and have her work on a few select things instead. I mean, she can't use her computer (math, typing reports, research) and most of what we do is very hands-on (think: creating slime in science and board games for math, etc.). I'm finding all my time is being sucked up by being with just one child at the hospital - when multiple kids need me.

Furthermore, they were not feeding her enough (ironic, no?). She told me she's been "starving" after each meal and snack, and very thirsty.  I had to talk to several staff in an effort to fix this. By the time I left last night, just prior to dinner, I believe I have resolved the issues we were having.  I'll find out at dinner today.

I have no clue what to expect - no one will give me answers (or they conflict) about what her schedule is like and what I need to be with her for. I was given this itinerary, when the day was half over, but it didn't tell me when the parent was needed. I did manage to track down her usual therapist and make all my concerns known - well, whatever she could articulate through my sobs. Turns out, she was pretty livid too - she had taken such great care to create a plan as unique as Julia is.

Julia CAN shower on her own but is unable to properly rinse out the shampoo, brush her hair, or put it in a pony.  There are so many daily living activities she is not yet independent with. She has NEVER slept alone. She needs verbal prompting or physical assistance for so much. What about brush therapy and meds?! She's confined to her room but hates to be alone. I'm panicking big time for my baby girl.

Turns out, I need not have been concerned. She called today (day 3) to tell me about the birds and ducks she saw out her window. She's very into bird watching and there is a great marsh right outside perfect for that. Armed with her bird book, nature journal, and binoculars she has been entertained for hours.  She had no trouble sleeping alone or getting up on time. She even roped a nurse into playing some games and puzzles with her!

My daughter is very brave and has grown up overnight. She actually said to me before I left last night "You don't need to be with me all the time, I am fine," then proceeded to stick her nose in a book and enjoy the quiet and calm of her hospital room.  I guess the leave-me-alone-Mom teenager stage has already begun! The one thing she added as I walked out the door - "Please don't forget my Bible next time you come." That girl. Gotta love her.

Wow, when I prayed God would give her strength and comfort her, He delivered! It might be time to pray the same for myself, huh?! :)