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Showing posts with label testing. Show all posts
Showing posts with label testing. Show all posts

Thursday, August 21, 2014

Our Appointment at the Melmed Center and Our New Eating Strategy

Today I took Ramya for her appointment at the Melmed Center.  We made an appointment at the recommendation of the school district when Ramya underwent her testing there.  My goal was to gain practical strategies for helping her learn, since we homeschool and I take my job pretty seriously ;). 

The developmental pediatrician we saw was a really nice doctor who was born in Pakistan but had extensive knowledge about adoption, orphanages in India, and common practices in India.  I was so glad!  She spent about an hour and a half with us talking about everything Ramya.... behaviors, attachment, history, learning, eating, and anything else we could think of.

We just started a new eating strategy with Ramya that I devised (I'll post more about that below) and I got a chance to talk to the doctor about it.  She said she thought it was perfect and she was really glad to see I was already doing what she would have recommended.  Yeah!  Since attachment issues and eating issues are all new to me, I feel like I'm flying by the seat of my pants sometimes.  I read a ton of books but the practical day-to-day implementation and hands-on practice of what I read just feels totally new to me.  It was very reassuring to hear that we were doing ok!  She liked our approach to the milk as a daily "extra" for weight gain and didn't think there was anything to add there.  I talked to her about our GI visits and my concerns there and she totally agreed with me that GI is not a good fit for us, as they do not really understand Ramya and her unique background.  Whew!

We discussed Ramya's learning needs and the doctor recommended that we get a psychoeducational evaluation.  The test is not covered by insurance and is very expensive, but I feel it is important and want to go ahead and get it.   The test will give us the specifics of the areas she does well in, the areas she is low in, what ways she learns best, how she processes information, etc...  It's 2 days of testing, at 2 hours per day, then a day to go over the results.  They will give me practical strategies and approaches for teaching her and helping her learn.  Though I cannot say I am looking forward to it, I know that the information we get from the testing will help me to know how to teach her and how to best help her learn and is really important for me to know. 

Another topic we discussed is Ramya's behaviors (things like lying, being controlling, attention-seeking behaviors, eating issues, jealousy, tantrums, etc...) and she felt like they are totally normal for a child with her background, which I totally agree with.  I basically told her it's all stuff we anticipated and nothing I thought was out of the norm.  I told her our strategies at home and she said that we were doing what she would recommend and just to keep it up and be consistent.  She is hopeful, based on what she saw in our interactions, that the behaviors will taper off after about 3-4 years of being home with us.  She said right now she is still trying to figure out if this is forever, and what exactly forever means, which I agree with.  I still feel that she is trying to figure out "family" and her role as "daughter" and "sister". 

The doctor recommended getting a hearing a vision test, but not through the district, which is what we did in the past.  I already had the vision test scheduled with Dr. Glonek next Tuesday so I will schedule the hearing tomorrow so they are both on the calendar.  Other than that, there's not much she recommends.  She said she could diagnose her with ADHD if we wanted, but that she recommended waiting to see if she has attention issues or if it is processing issues that are exhibiting as attention issues.  I told her a diagnosis wouldn't change anything anyhow, and that I wouldn't want medication anyway, and that I'd rather not diagnose her at this time, and she was fine with that.   We will see her again in 4 months to talk about the testing results and see if there is anything further she recommends. 




So back to the eating...




I have been thinking  (and praying) long and hard about our eating struggles.  Ramya has been spiraling since my hospital stay with Madi and things had gotten even worse in so many areas, especially eating.  The control over food and attention-seeking behaviors with food were over-the-top.  I just came to the point where I wanted to break down in tears because every meal was so terrible.  Hours and hours and hours every day.  It was hard to just sit down and have fun after meals because I was so tense and the rest of the day was so rushed.  I smiled, we played, the kids had fun, but felt it was fake and really wasn't feeling happy, that's for sure.  I was just trying to fake it until I could make it real, if that makes sense.  With homeschooling, therapy, and appointments, life can be busy anyway, but add in hours of eating every day and it was terrible.  I knew that something had to give for not just mine and David's sanity, but hers as well.  It's so hard with her because positive feedback or negative feedback for food get us in the same spot... it gives her power over us and power with her food, which leads to control over food and refusal to eat when she feels she needs control.  I decided the best thing we could do is stop giving any attention to food, positive of negative, so it loses it's power.

When meal time comes, we pick out what goes on the plate together and I make sure she has what she needs on the plate (meaning something with protein and healthy fats, fruits or veggies, a grain, etc...).    I set a timer for 30 minutes and I sit by her.  We talk about our day, what we will be doing, funny things that happened, anything and everything, other than food.  I do not ask her to take bites.  I do not tell her good job.  I do not remind her that her body needs food to grow.  I do not give her any feedback on how she is doing.  She doesn't like the lack of attention with food, so when she tells me something like "look mom, I took a bite", I just tell her, "Remember that mommy is not worried about food, so you don't have to tell me, it's ok.", or something to that extent.  When the timer gets to 25 minutes, it automatically gives a warning and turns yellow (it glows green up until 25 minutes).  Then, when time is up, it gives another warning and turns red.  This way the timer is giving the reminders and she is managing food herself, instead of it coming from me (or David, since we are both using this strategy).  At the end, eating time is over and I put the food away.  Of course I still need to make sure she is getting enough calories, so if she hasn't eaten enough, I give her some extra of her high-fat and high-protein milk so that she is still getting what she needs, but without any positive or negative pressure with food.

We have only been using this strategy since the start of the week, and of course I do expect some testing of boundaries with it, but my hope is that staying consistent will mean no more food battles and more quality time together.  I really believe that we need to get to the root of the food issues and try and heal what is causing them.  Hopefully having less time on eating will mean more quality time together to just enjoy each other and work on attaching and bonding.  So far it is working well and she is eating the same amount of food as she ate before, but it takes 30 minutes instead of 1 1/2-2 hours.  Because she would wait for either positive or negative feedback to take a bite (or hold it in her mouth if we weren't looking, because she knew she wouldn't get feedback if we weren't looking), eating took forever.  And when she wanted attention (so constantly ;)) she would not eat to get that attention.  But without that part, eating takes so much less time.  That, of course, leaves us more time for playing, dancing, rocking, homeschooling and just being, which is what we needed.  I am seeing her strong need for control change shape now, which isn't great as it's targeted towards Madi and Conner quite often, but we will get there slowly but surely.  I try to give her lots of appropriate choices throughout the day so that she has some control.  Though it doesn't solve the problem, it does help, and I know it will all just take time.  I also try to give her lots of appropriate attention in other areas which helps.  Ramya is such a sweet and fun girl, so enjoying time with her is easy!

So that is that for now.  I have some big announcements to make, but it's almost 1 a.m. so those will just have to wait.  Please continue to pray for our family as we continue to grow as a family of five.  Even though it has been almost a year and a half since we officially became a family of five this process of learning, growing, and healing will be ongoing for years for all of us.  Please pray for wisdom and guidance as we go continue on this journey together, as well as for lots of peace, healing, and joy.  Thank you!




 

Sunday, May 11, 2014

Some Hard Test Results

This week was a hard week and I haven't blogged about it yet, so I figured it's about time.  I have been getting Madi and Ramya tested through our local school district.  It's not so they can attend school, as they will be homeschooling, but so that I can apply for an ESA for them.  In Arizona, a child with a disability who is not attending a public school can get extra money to be used towards curriculum, therapies, and also to save for college.  You go through testing in the district and whatever extra money the district would get for that child, based on the services they would qualify for, you can get instead.  They both need 100 days of public school (we will be doing k-12 online), and then we can apply, now that the testing is done.  We plan to use the money towards extra therapies (fun ones, like music therapy), curriculum, and therapeutic riding lessons.
 
Earlier this week I went in for Ramya's testing results.  I was a bit taken back by them and am still trying to process it all and come up with a game plan.  Ramya's IQ came back at 58 using the Woodcock-Johnson Test of Cognitive Abilities.  That rates her at "very low", and according to them, she is intellectually disabled. 


Woodcock-Johnson R
IQ ScoreWJ III Classification[34]
131 and aboveVery superior
121 to 130Superior
111 to 120High Average
90 to 110Average
80 to 89Low Average
70 to 79Low
69 and belowVery Low

I expected Ramya's test scores to be low.  Not only do you have the lack of consistent care, nutrition, and educational activities the first 5 years of her life, but she also has only been home 1 year so she hasn't had time to catch up on language, experiences, and life yet.  She's still trying to figure out this thing called family as well. Then you add in her emotional needs, low attention span, and food issues, and things get a little more complicated.  But the truth is, I knew something was going on.  She really struggles with retaining information, and so many times, I have wondered what I was doing wrong.  For example, we work daily on letters.  We do one letter a week.  We write our letters in sand, in salt, make them with play-dough, form them with handwriting without tears blocks, write them, paint them, make them in shaving cream, make them with wiki sticks, make an alphabet book, look for them in books, read alphabet books, trace them on textured letter puzzles, and the list goes on (and on, and on, and on...).  We also review our letters consistently.  I think after this year, she possibly remembers about 6-8 of them, with most of those being the letters in her name (but she can now remember most of her name WITHOUT prompting... this is HUGE!).  We also work on counting daily with one-to-one correspondence.  I thought she had counting to ten, but most days, it's gone again.  She is still skipping many numbers.  I really did  not expect her to test so low, though, and it's taken me back a bit.  She scored pretty well in verbal (in the 70's), but auditory and visual processing, memory, and all of the other areas were mostly in the 50's.  It's tricky because she is very verbal, so it's easy to assume she understands, but that's not always the case. 

The teachers (OT, PT, psychologist, special education teacher, and speech teacher were all there) were very supportive and encouraging.  They said that even though IQ doesn't often change much, they think in Ramya's case there is good reason to think once she gets more experiences and gets more time to catch up, we will see her IQ numbers move.  I completely agree!  I KNOW she is smart, I just have to figure out the best ways to work with her to help her succeed.  They also said I am doing all of the right things with her.  They said she will just need repetition and that I have to keep doing those things over and over again.  I  also have an appointment coming up with a developmental pediatrician at the Melmed center and I am looking forward to getting feedback from them in addition.   I am also going to use some of the extra money we get for her for tutoring.  I want to bring in a tutor that is very knowledgeable in helping kiddos with special needs to work with her and also to help coach me in how to best help her.  I am also looking in to auditory and visual processing therapy  see if that may help.  Right now I am so very thankful to have my background in Education (I have my Master's degree in elementary education, a reading endorsement, and an SEI endorsement).  I really believe my background will help with teaching her, and I am so thankful God primed me to be her teacher!  We also have a lot of resources available to us, and am I thankful for that as well.  I am stumbling through a plan of attack, but it's slowly coming along and I now have more peace about how to proceed. 

When looking back at this past year and how far Ramya has come, it's amazing to see the huge strides she has made.  When she first came home, she couldn't hold scissors.  When she could finally hold them, she didn't have enough strength to close them.  Now she can hold a paper in one hand and scissors in the other and cut a basic shape.  She used to know how to hold a pencil, but could do nothing more than make very tiny lines on paper.  Now she is able to draw some of her shapes, and is even creating drawings on her own.  When I sat down with her a few days ago, she drew a picture of herself that actually included eyes, a smile, and a body!  She can mostly remember her name and how to write it, and can also spell it out loud most of the time.  She knows her basic shapes and colors, and remembers about 6-8 letters.  She can recognize a few written numbers as well.  Even though learning seems slow at times, she IS learning and is making a lot of improvement.  Her English is also coming right along and she speaks in full, clear sentences.  Oh, and the singing.... there is lots and lots of singing ;).  

Please keep us all in your prayers.  Between Ramya's newly diagnosed food allergies and trying to figure all of that out, our upcoming trip to Boston for a second opinion on Madi's upcoming surgery, Madi's upcoming surgery (June 2nd), and the rest of life, of course, there is a lot going on right now.  David and I are a good team and the kiddos are rock stars, but there are moments that can still feel stressful none-the-less.  The other day I had to make so many phone calls, my phone was dead before lunch.  Those are days I just don't love.  Please pay for peace that surpasses all understanding, clear direction on how to proceed with Madi's surgery, the right therapists and strategies to help Ramya, and lots of days of fun and laughter sprinkled in between.  We are so thankful for our village and all of your prayers!


But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.
- Isaiah 40:31
 
 
 

Wednesday, August 21, 2013

A Quick Medical Update

Let's see, where to start....  A few weeks back I had to take Ramya to Thunderbird hospital outpatient center for some hormone testing.  She needed an IV (boo...) but did well with it.  With her dark skin and skinny squiggly little veins, they had a bit of a hard time getting started, but were able to only poke once, and numbed the area first so it wouldn't hurt too bad.  She held my hand and snuggled in to me and did well.  The whole test took about 2 hours, from set up to completion, so not too bad.  We watched TV, played ipad, played with toys, etc... We will have the results next week when we go see the endocrynologist.  All her blood tests have come back good so far, so they aren't sure why she's developing so early.  Hopefully this test will give us some more answers.



Last week Madi went in to be casted/fitted for a new set of HKFOs.  She got her last pair about 1 1/2 years ago and they just can't be adjusted any more for her, so it was time for a new pair.  She picked plain old pink, with ladybug decals.  We go in the second week in September to pick them up.  It's great timing too because then... we are off to Disneyland!  Wooo hoooo!
 
 
 
 
 

Thursday we head down to see the urologist.  Madi's vesicostomy is getting very tiny, and I'm afraid it might close up.  I want to have him look at it and make sure he doesn't want us putting a cath in there a few times a day to keep it nice and open.  Thankfully it seems to be working well and it doesn't bother her.  She's figured out how to SHOOT urine out of it when she's sitting on the potty, though, kinda like a squirt gun.  She thinks it's hillarious.  Oh the joys of 4 year olds :). 
 
Oh!  I also got a call today that our shower chair will be delivered on Thursday!  I'm so excited!  It's been a really long wait to get it, but I know it will be worth the wait.  I can't hold Madi (or Ramya) in the shower any more, due to their weight and being slippery, so this will allow them to take showers again.  Yeah!  I'll post pictures as soon as we get it I'm sure :).
 
That's all for now!  I'm beat and off to bed.  I hope you are all having a blessed week!