Sensory Kid

This summer while at the John Tracy Clinic it was brought to our attention that Lillian has a sensory processing disorder.  I had a hard time with this.  I never really mourned her disability from her moderate to severe Sensorineural hearing loss.  I had several friends growing up that were hard of hearing and Deaf that were strong girls, smart, funny, sweet and amazing.  Everything I hoped my daughter would become.   They did it with the help of supportive parents, so can Lillian.   I did feel and still do feel very very guilty and sad that I hadn't noticed her hearing loss myself.  I had become so over protective and accustomed to communicating with her non-verbally it just totally didn't register.

 I still love the Young Woman in my Church talking about babysitting Lillian.  She is the easiest child to babysit because she is so accustom to communicating non-verbally she never gets upset like other toddlers when you don't understand what she wants at first.  Lillian would literally have babysitters hold her up to the cupboard so she could show them the exact box of crackers she desired.  Even to this day she is constantly having to repeat herself multiple times to me.  You want your shoes?goons? ohhh balloons.

The sensory processing disorder hit me hard.  I cried.  A lot.  Part of it was relief.  Oh that's why Lillian freaks out when her cloths get the smallest amount of wet.  Now, I know why she won't wear jeans or certain shoes.  It just bugs her past the point that she her little nervous system can handle.   Also that's why she randomly will push child over or pull their hair which is so hard to understand how she can go from being so fine to so hot in a second.  She is over responding or other times under responsive when she crawls in a ball and rocks back and forth in some situations.  
Many DHH (deaf and hard of hearing) people suffer from having their senses unbalanced.  If I just think about it from a purely the five senses point of view... Lillian used 4 senses to explore her world her first two years nine months of life.  Her body had her moving very fast looking every way not to miss anything.  She observed, tasted, felt, and smelled her way around.  As a baby that seems normal not as a four year old,   But her body still wants to do those things.  Observe, move around so fast to  see everything and not miss a thing- really hard when we need you to sit at the table and do a worksheet.  Taste-  Lillian always has put everything in her mouth, normal at 1-2 years not so normal a 4.4 years.  Now she has chew toys to help her with her oral biting needs. Touch- I watch Lillian walk down the hall she has her hand on the wall feeling the bumpy texture as she moves from room to room exploring her world by touching the walls, floors, people etc.  Smell.  She often is the first one to tell me Jackson has a dirty diaper.  funny super noes girl.

http://www.spdfoundation.net/

We started up Occupation Therapy the next month after receiving this suggestion and I had so many questions.  Heaving lifting calms Lillian. She loves to spin and her body craves it.  She doesn't get dizzy.  Is it because the inner ear hairs are damaged and thus don't fell the movement of the fluid in her ears to resistor that movement?  I still don't know how to exactly help Lillian.  Its like tight rope walking in high heels, impossible.    I am more patient and take time to prepare her for situations that will be difficult.  We leave for things 15 minute early just to help her transition.   Sometimes I know I am spoiling her too much, but she also knows the word NO and has heard it a lot the past few months.

Her behavior spiked at an all time horrible these past few weeks.  It's hard to see her so upset and not understanding.  They have the behavior specialist working with her at school and I have become consistent with timeouts at home.  She has a safe zone in her room she can run to if she gets too upset.  We talk about getting into trouble big trouble hurting someone, or little trouble not picking something up or being rude.  Three new students have joined Lillian's preschool this past month, she has had a hard time with that change.  I formally requested she be evaluated for sensory issues in October 2013.  The school district took the full 90 days they legally have to evaluate her, I called called and called.  The OT did not have the report finished at the IEP (individualized education plan-  for kids with special needs) meeting.  While she really seems to know what she is doing, I was frustrated.  After calling an additional IEP meeting and discussing what is going on with our home district who really really has their acts together. We all meet and agreed on what services she needs.   Sorry to vent.  She is doing so much better at school.  I see her struggle in everyday activities and I just wish it could have been me not her to have these trials.  Having said that.  I am a teacher, I went to IEP meetings before for other children.  I have a great ability to know what will help Lillian and what will distract her further.  I just need more hours in the day and extra hands.  Maybe I can become a sleepless octopus?

The things we do at home are so simple and fun. Therapy is play and not difficult.  The activities really can involve all my kids (Elliott still doesn't like to get hand messy though)  It's making me a more fun mother, thinking outside the box.

Our Church had a woman's conference last weekend.  Last minute Steven, encouraged me to go and I did.  I got several points out of it, but the main one was that I cannot compare, myself or Lillian to others.  It's just not healthy and won't help anything.  We all have our own strengths and weaknesses (oreos!!!)  Also God knows us and loves us so he prepared us for our challenges on this earth.

 Most of Lillian story I post on my other blog, but I felt I needed to post it here also!  Parenthood has brought me the greatest joys and happiness I have ever known, but I have never ever worked so hard in my life.  I have had flaws exposed I didn't even thing I had.  It's worth it though.  Investing my time in my kids is a blessing I see now and will see in years to come.

Hugs!
Amanda

 shaving cream!  Such fun!  I added some food coloring as Jackson Lillian and I were going over the colors.  I will dye their hand a little.  Also spread it on the table and practice letters, shapes, and drawing.  One family I know played shaving cream pictionary the other night for family night :-)

 Lillian loves to do art work her own way.  I laugh when something comes home from school looking perfect cause I know that's not my Lillian's original master piece :-)

ABR and CAT Stan

I am grateful to the professionals who took care of us on October 2, 2012.  I am glad I meet the two nurses that would be with Lillian the entire time.  Watching your drugged 2 year 11 month old daughter being wheeled away down a sterile hallway surrounded by medical personal and medical students is a hard thing to witness.  One medical student actually came running after us and told us we could go in the elevator with her a little longer.  By the time we said goodbye to her again she was all smiles and did not have a clue who we were.  Things went well.  Having said that I will be honest with you and confess that UCLA is not set up for small children at all.



Things to bring-

All Medical records- no matter how many times you call, fax email those records when it comes to it they will get lost misplaced or disappear the day of.  Bring your binder.

Comfort item for your child, blanket, binkie, stuffed animal.  Toys, books and movies.  Nothing ever runs quite on time anywhere.  Lillian can read our emotional state better than anyone I've ever met.  I am nervous and she is a wreak.  If I am distracted distracting her then all is better in the world.

Bring snacks and water for you and a baby if you have one handy (okay joking, but for me, as a mother, having Jack to hug kiss and care for while we waited was very helpful to me)  The cafeteria food was amazing also but I always like to have snacks on hand just in case.  We had breakfast there.

Lillian the weeks prior to the procedure had just began to understand the concept of bandaids and being hurt.  I bought some of her favorite bandaids for her.

Lillian was surrounded by older people prior to her ABR and while she was waking up.  It was a large room with beds agaisnt the walls and a large nurse's station in the middle, carts everywhere to monitor peoples vitals and get them ready for why they were there.  Small blue curtains were meant to separate each pacients zone.  Early in the morning we were the only family on one side of the wall.  At this time they let us hae Jack with us as he is adorable and a distraction to Lillian.

We sat in the lovely waiting area after eating breakfast with mostly medical students at the cafeteria. We checked in with the receptionist and got a pager so they could let us know when Lillian was done.  We sat in the back corner of the room so I could nurse Jack discreetly with my cover.  Taking care of Jack and listening to other peoples conversations helped me feel a little better about everything.

We were called up after a few hours.  The shock of seeing Lillian strapped down with tubes and lines everywhere was shocking.  The audiologist was also trying to go over the initial findings.  I just remember hearing that is was much worst than we intentionally thought and then I checked out.  Blah blah said this nice young audiologist as I sat and stared at Lillian.  I was in shock.  Total shock.  Some nurse saw I was holding a baby and kicked us out of the room.  Steven stayed with Lillian.

Upon waking up most of the beds were full. Waking up to find yourself taped down to a bed with tubes out of your nose and arms would be frightening to any child.  My highly active hard of hearing Lillian found it hysterically frighting.  I was in the hall way nursing baby brother when my husband frantically called me.  Help? where are you? she is waking up and needs you!  She really did not need me.  She was still in a fog of medicine.  It was more that hospitals freak Steven out (totally freak him out) and seeing Lillian taped up and strapped down was to much to him.  I was to much for me also, but some parents have to go though this often for other procedures other than an ABR.  Breaks my heart to think of them.



I walked and handed off the baby.  The baby technically wasn't even allowed to be in room but we had to switch off somewhere and leaving either child alone was not an option in our minds.



On nurse kept telling me I had to make her be quite.  How to you make anyone be quite? Let alone a child who has very little understanding of the world around time. I comforted her the best I could as she was taped down and strapped in bed.  Finally a new nurse came along and handed her iphone to Lillian.  It was pink and I remember being afraid Lillian would throw it on the floor.  I switched it out for my purple one.  The next nurse helped me unstrap and tape Lillian so I could hold her.  Once I got her out another private recovery room had opened up so I had to pin her back in the crib bed and walk with her to the other room.  Didn't see Steven and Jack, no phone reception to tell them were we had gone.  Lillian still howling.  Get her in the new private room and get to hold her change her diaper and comfort her.  The nurse puts on a movie, a vhs of the Little Mermaid.  She brings Lillian juice and crackers and tries to tell me all the rules of dismissal while Lillian cries in my ear.  I remember being told I had to sit in the back seat with her and hold her head up the entire drive home.   Okay you can go home now.  What? No give us a few more minutes.  Maybe we can untape and take out the lines she has in her hands.  Oh opps okay.  They took off the tubes in her arms from the medicine and offered her a plain band-aid, luckily I had brought some Dora with me.  Problem solve.  Steven found me from listening to Lillian's wailing.

We waited till she could stand a little and then had to leave.  I think of how horrible it was in the open room recovery room and I see why perhaps the nurse was trying to rush us out.  I did not sit in the back and hold up Lillian's head.  We made it home totally drained from the morning.

The results were mailed to us quickly by the audiologist. I had to call the ENT for two weeks before the doctor finally returned my calls the secretary knew me by this point.  The results were normal, meaning her inner ear has all its parts.  Her hearing loss is from the damage in the hairs in the inner ear.  Those hair are too small to see, but they are not transmitting the signal from the sounds in her ear to the nerve in her brain.  She could someday be a canadit for a cocular because she has nerve and other parts of her inner ear, but only if her looses more of her natural hearing will we choose to do that.  Now a days they can do implants that preserve the individual's natural hearing.  Lillian is doing very well with her hearing aids.  I feel this is a choice she can perhaps make someday for herself.

In the mean time I take her to get her hearing tested every 4-6 months.  I get her tested aided and unaided.  In the past year her hearing has not changed, varied a small amount but not changed

Hard of Hearing: our journey helping our daughter hear

In March of 2012 my mother and husband began to express concern about our daughter Lillian's hearing.  I was very pregnant and could see how smart Lillian was, so I didn't see it.  After visiting our pediatrician for one of our princesses many ear infections, she told me that they screen all children at age three and not to worry. She had passed her new born hearing test the second time around.  First time there was fluid in her ear.   I pushed it out of my mind, we had visited the ENT and they had not said anything about hearing testing.  Not all children are the same, while her older brother is very mellow and a great listener Lillian was very active and all over the place.  She was just trying to figure out the world around her.  Often times in photos she would not be looking at the camera because well I know now she couldn't hear me say cheese.

Sadly I realize now how much those few months could have meant for us if I had gotten her hearing tested earlier.  No crying over spilt milk-  clean it up and move on and we have.

After having baby boy and coming home we all had colds,  Lillian had a double ear infection and could not hear a single single thing we yelled at her, and oh we yelled treat, cookie, candy etc.  We made an appointment at the county education audiology department, learned more sign language and waited. 

Lillian was two years old and nine months when we were first told she had a hearing lost.  That morning I knew, it didn't shock me.  I knew so little about hearing test that I did not understand the degree of her hearing loss for sometime.  They referred us to UCLA,  who had the skills to get the additional test we needed but in my opinion lacked the skills to work with my child and had horrible bedside manor.  The first time that we heard about hearing aids was standing in the waiting room when they told us we had to pay the money up front because insurances never cover them.  That was a shock to us.  First that she needed hearing aids(a year later they are my most favorite invention in the entire world and I love them) and second that insurance would not pay for it.  Without them my daughter can only hear airplanes....  she needs them but they will not cover a dime.  That made me cry- it still upsets me.  We are luck, really really lucky.  We have family that were jumping at the chance to pay for them,  we also put some money in excited to give Lillian this opportunity to hear. 

We opted to go to a private audiologist who came recommended by our early start case worker closer to our home.  UCLA was over an hour away with no traffic, with a little baby and extremely active Lillian we just could not do that drive all the time. 

We meet with them and a week later Lillian got her hearing aids.  Phonak Nadia http://www.phonak.com/com/b2c/en/products/hearing_instruments/naida/overview.html  They recommended the more powerful model because although we still did not know Lillian's true hearing  loss due to her lack of cooperation during testing.  The night before we went to the audiologist I let Lillian watch a movie on our portable dvd player.  I put the earphones inside her little ears and turned up the volume ALOT.  She loved it.  She watched Lelo and stitch. 
The next morning we went up to her audiologist.  They had programmed her hearing aids and showed us how to put them on her.  She heard her baby brother for the first time.  Her face light up.  She heard my voice also.

Lillian watching her favorite movie Finding Nemo with her hearing aids the first day she got time.  September 7th 2012.

 Her actual hearing aid is purple and we originally ordered light pink ear molds but due to a mix up they came hot PINK!  Which was a blessing because I could see them in her ears when she was across the park.

A month later we had a sedated ABR at UCLA in addition to a CAT scan to find out about the anatomy of Lillian's inner ear.  It was a good thing we ordered the more powerful model :-) 

I mistakenly thought we would plug Lillian's hearing aids in and be good to go.  I underestimated the amount of work she had to do to catch up and learn spoken language.  While she was being evaluated for her first IEP (Individual Education Plan) by our home school district, I realized how little she actually understood. 

It was difficult.  I wanted her to do well, but was being shown how far behind she was.  She was frustrated and would get upset.  Yet there were moments she would shine,  she would laugh and be silly and win over everyone she interacted with.  I was thankful for these moments, she is a love and I wanted others to see this. 

Good news was she was able to go the school in a school district in the next city over, its wonderful a new classroom for the deaf and hard of hearing focusing on spoken language.  It's such a blessing in our life. The teacher and her aid have an amazing since of humor and Lillian fits right in. 

 We were lucky.  Lillian liked her hearing aids.  She wore them mostly all the time from the beginning.  We were advised to be in charge of when she wore them, don't let her be in charge.  Sometimes when she wanted them off I would put them back on back on back on to prove my point.  I really tried to be considerate though, some situations with really loud noises I would offer her the option of not wearing them.  Her aids are so loud I can hear them when she starts to fidget with them.  Sounds like radio static. 
  Sometimes at the park she would take them off and hand them to a friend or parent.  All of which knew to bring them to me.  She chewed the ear molds once or twice in the car when she was mad.  Oh dear.  She learned quickly not to bit them as they did not work when they had holes through them.  Once she attended school they got her to wear the brilliant clip  Which helped keep the aids on her body if she pulled them out. 

This is our journey.  Lillian at the age of three was diagnosed with having the understanding of a infant.  Simple commands like hand me the blue car, or put the red block inside she had no understanding of.  She has made 18 months progress in a years time with her hearing aids.  We are so proud of her.  It takes a lot of work, but that's what parenting is it's a lot of work.  I happen to think it is all worth it.   Best investment to be made.

I wanted to keep a record of Lillian's journey.  Our Journey together.

Feeling guilty

It happens, on occasion, we all look back on the 'what ifs' though out our lives.  I really try not to because with them seems to come a flood of emotions I would rather not entertain in my heart.  One of them being anger... why did the doctors assure me she was fine.  The ENT (ear noes and throat doctor) did not even mention hearing loss all he talked about were tubes. Why didn't I listen to my mom and husband earlier.  and the hardest Why didn't I notice.  I am a stay at home mom, I stay at home- I am with my kids day in and day out.  Yet I couldn't see it.  It didn't even register as an idea, a thought.  All of those unheard lullabies, unheard warnings- I know there were flocks of angel looking out for her as she could not have possible heard my warning cries.  I at times am mad and other times sad.  I know it is normal and healthy to feel these feelings. Yet that won't help me.

Honestly, Lillian will catch up.   She is smart, strong willed and really has a quick humor about her.  So there is no point beating myself up- could of, would of, should of.  Besides maybe I would have sheltered too much, spoiled her more, and treated her differently.  She loved her hearing aids since the day she got them.  That has been a huge blessing.  She is just now understanding everything has a name.  The night night sound I have sung to her every night she now after a year of her hearing aids can sort of sing along with me.  What a miracle.

At the age of 4 years 3 months she finally will sit long enough to play a game with me.  After I tuck in Baby Brother for his one 45 minute nap (my first child took a 3 hour nap... I foggily remember what it was like to have free time).  She runs and gets the Cinderella game she got for 'Jesus's birthday'.  We also have enjoyed the bug game which is helping with number recognition.  While sometimes the three hundred things I should be doing run though my head I really enjoy playing games with her.  She also has great boundaries and reminds me to ignore my phone :-)

Both she and baby brother were singing the ABC's together the other day.  Made me smile.

    Her baby brother has started asking me "what's that"  Connecting there is a name with every object on this planet.  He is as thick as a brick and will be with her to help her.  Her older brother gets it some of the time when he look at her and talks loud.  Other times he treats her like any annoyed older brother would.  When I see them helping each other at times and my heart melts.  My favorite is when they watch a cartoon that is suspenseful older brother will curl up next to her and she will comfort him.  She is surrounded by these delightful brothers for a reason.


Currently one of her hearing aids is in for repairs the guts (circuit) has gone crazy on her again, hissing and crackling occasionally.  This is the third time one of her hearing aids has had to be sent in.  Each time it gets harder because the older she gets the more she understands and the more oblivious it is that she really needs both hearing aids.  I have spent a lot of loud speaking today, when normally I don't have to.  We have had a lot of miss understandings today also.

Green food dye.... how to get if off your hands and child

Happy Saint Patrick's Day!

The day started like any other saint Patties day.  We wake up check who is not wearing green pjs and pinch. The Dad got pinched as I had carefully plotted what myself and the children would be wearing the night before.   We then feast on green waffles, made with help by both kids.  Age 4 helped measure the mix and age 1.5 added the water.  Then we squirted in the food dye.  Here is where the problem started.  Lesson  1 learned is PUT AWAY THE FOOD DYE right after using it. 



Dropped 4 year old off at preschool, was disappointed to see a number of Non green wearing parents.  Or was I embarrassed to be wearing bright green?

Came home to clean up breakfast was in the middle of dishes and notice Toddler was chewing on the green food dye bottle.  All over her hands, the table and her clothing.  (here is where you should not panic but put on gloves to protect your own hands... Yeah right I did not do that... Lesson learned number 2 Protect your own clothing or skin first.  sigh!)

So we clean us up the best we can (but in fact are just getting more dye all over us as I try to wash it off)  Give up take some photos while waiting for computer to turn on...and think how I am going to husbands business recruiting dinner tomorrow with GREEN HANDS AND FOREARM.  Very professional, Yes I stay home with my kids obviously. 
Computer finally warms up...To GOOGLE  How to remove food coloring....

Lesson 3

Warm water and either Baking soda or toothpaste!  Repeat.  I grabbed both ran to the kids bathroom started drawing the bath water for sweet girl.  We used some nasty ironically green watermelon kids toothpaste.  Which worked well.  I put her in the tub and started on the baking soda on my hands.  I added some to her tub figured it could not hurt. 

My skin is dry, so it was a challenge but as I examine my hands an hour after the incident they are clean and most importantly not green :-)  Yet the dishes are still not done and I won't be dying anymore food green today!