A New Year 2013

Wow, I can't believe that time has flown so quickly.
Currently watching the KU vs KSU basketball game and I am on pins and needles.  There is 3:46 left in a 6 point game.  AGGGG

So, my purpose in starting this blog was to help parents with kids who have special needs be able to navigate this new world with more ease than I have.

 
At one point in what seems ages ago, I was looking into getting Alex a walker, a stroller, and a safe bed.  Well, I will consider us lucky in that we were able to get the walker and the stroller.  Both have been a HUGE blessing to Alex and myself.  He is currently rocking the walker at school.  I feel so proud!

Are we famous?... LOL

I spent most of Monday sitting, cleaning, and playing with Alex.  Just exactly what I wanted to be doing, and where I wanted to be.  We made a trip to the grocery store and the library.  Thankfully, M gave us her cart cover because I am pretty sure Alex ate the entire handle of the grocery cart.  Two more listening sessions down, and I can't wait to see what J says at OT therapy Thursday.

Today is a new day and busy we must be.... During Alex's therapeutic listening time today, Alex held on to a vibrating toy for several minutes.... and he colored.... and he played his xylophone!

We followed that up with some down and dirty PT time with D.  She worked him hard.... climbing up onto surfaces, pulling up to standing.  One thing I will work with him on in the next week is getting into a lunge.  From the lunge position, he can weight bear onto the bent leg to get into standing.  The hard part is that both legs like to move together.  He can break this pattern (for instance he crawls instead of dolphining) but it is difficult for him to do.... the whole motor planning thing.

Today is Tuesday and words can not express fully how much I love my family.  The Magazine... Parenting Children with Special Needs came out today and there we are- Andy, Alex and I... on the cover.  It's funny because I don't consider our family to be an inspiration like the article grouping says.  I consider us to be lucky, loving, strong, determined, dysfunctional, and perfect for each other.

Last week, Tuesday, I took Syd to her therapist appointment.  We are trying to get to the bottom of why she is reluctant to be a contributing member of our family.  The idea was thrown out that maybe she holds some resentment toward Alex.  She hasn't been the same since.  Even when we first started trying to figure out her quirks, she has never reacted as violently as she did last week.  For two full days, she hid in her room.  She refused to talk to me.  Finally, I brought her a cup of hot cocoa and we had a heart to heart.  The crux of the matter is that we were insinuating that Syd wanted "normal".  We implied she didn't love Alex.  She felt like we didn't understand at all.

I tried to explain, again, that we all hope for "Italy".  We all hope for normal healthy children.  Didn't she feel sad when she looked at her friends' families.... everyone "normal".  She shook her head and said, "Not at all."  I said, "Syd, there are some days when I see little children Alex's age, doing normal 2 1/2 year old things, and I get sad.  I wonder why?  What did I do wrong?  Why can't I have what they have?"  She responded, "Nope, not me.  Alex makes me stronger.  Alex makes me love more."  Fighting tears, I asked her, "Syd, are your friends teasing you about Alex?  Are they making fun of him?"  She said, "Mom, you know Sarah, Ginger, Mason.  You know how they all love Alex and they fight over who gets to push him in the stroller.  He is our team mascot.  He makes everyone smile.  They all love him."

Which brings me back to the article.  If you have a chance to read it, you won't be surprised by the story in it.  This is Syd.... her heart has the softest spot for those who are unique.  She rejoices his successes much like I do.  When he is sad, she is there.  When he is in need, she is there.  When he needs motivation, she is there.  When he needs giggles, she is there.  When he needs a sister, she is there, and will always be there.  A mom couldn't ask for more.

Slacker me, overachiever him

No matter what I feel like, my days always move forward.  Moms, you know what I mean!  Just when I feel confident about our schedule, a loop is thrown.

Tuesday during PT,  D and I worked hard getting little man to look up, crawl up.  When the ledge is 1 to 1 1/2 inches, he scales it like it's no big deal.  You add another 1/2 inch and he just stops.  The left arm goes up, his mouth goes up, but his right arm is "stuck".  Something to work on!

He also tried the Kid Walk again.  Again, not sold on this walker.   D also suggested to take Alex out of the jumpersaucer.  She said to try to get him more standing time where he can't bounce.  AGGGG.  He loves jumping!

Wednesday, M and K came to check up on the Beaner.  He sat up for them on his own!  We discussed "prepping" Alex for his PT sessions by giving him jump time before we go as well as joint compressions.   The idea of new toys was broached, but K suggested that we probably need to teach Alex how to interact with his toys.  He loves to dig in his boxes- whether it's the noise or the movement.  But simple cause and effect toys need to be shown to him many times.  We need to help him repeatedly in order for him to get it....  Also, to "play" with the toys, not just make them go.   The trampoline he received for Christmas was used as an example.... does he know to jump on it?  Does he know what it is for?  Has he watched anyone use it before?  We let Aaron jump.... then bounced his toys on it.... finally putting Alex back onto the trampoline.  A couple times, he did bend his knees and initiate a jumping movement.

After a painstakingly slow dinner, Alex proceeded to throw up right before bed.

Thursday, we saw Dr. K.  The morning had been completely chaotic with Sydney and Aaron refusing to cooperate.  By the time we got there to be adjusted, my nerve level was very high.  Dr. K reminded me that he might be in need of a break, and myself as well.  The stress of the week (starting with holiday Monday, horrible session with AG and Syd on Tuesday) was bearing down hard right in the middle of my back.  Just thinking about it makes my body tighten up even now.  So, we didn't make it to Speech/Aqua/OT.  Boo me.  On the bright side, Alex took a 3 hour nap.

Friday, I was woken at 3 am with Aaron throwing up in the middle of the bedroom floor.  So, Alex may have had the flu!  At 6:45, Aaron threw up again prompting me to call him in sick for the day.  Now my concern was, how do I get Alex to his Toddler Class with Aaron at home.  I emailed his teacher, S., and she said someone could take him for the morning.  So, swimsuit in hand, I took Alex to IDC.... without me.  

G was so excited to share that as long as she held his forearm, Alex would hold onto the shakers better.  The left hand the entire time, the right hand would at least wrap around.  He also took a nose dive out of the cube chair to army crawl to the big drum and tried to crawl up it!  Too funny, as that is exactly what D is wanting him to do.  She said she pulled him back and made him do it again!  LOL.  Love his teachers.

Saturday and Sunday.... Andy says Alex is broken...  He is just overall fussy.  Not himself.  Perhaps still not feeling tip top.  He ate lots of popcorn and chex mix at the Bingo Night and did some fantastic pointing and touching of the Bingo Cards... 

NEW SKILLS- 1.  Pushing away the food/arm/cup/bowl if it has food he doesn't want

2. Initiating steps on his own, without weight shifting.

3.  Grabbing his toy bucket and pulling/pushing to move it out of the way so he can get a toy.

Maybe.... the therapeutic listening is helping.... ;)

Rest of the Week... Jan 9-15

Wednesday, January 11.  Alex had home therapy with M. from Infant Toddler Services, and K. from CCVI.  Grandma Tish watches Alex on Wednesday, and stayed when she brought Alex home so she could stay updated.

1. We talked about Alex's sleeping pattern which is messed up right now.  I brought up Melatonin.  Thoughts were mixed- could really help, could send Alex into early puberty messing around with his hormones.  This idea brought up the need to test Alex's hormones.  K. discussed Optic Nerve hypoplasia  being a catalyst for early puberty and if we are going to give Melatonin we need to make sure we know where his levels are at.  
2. Concerning crayons- take off the paper.  Tape to light box.  Wait till Alex touches the crayon, then make it move and make a silly noise.  If his hand releases, the crayon stops and so does the noise. 
3. Prime Alex before asking him to work hard, use his hands, etc...  Deep compressions, joint compressions.  Idea is to know where his body is in space.
4. Don't forget to use weighted vest when he is sitting to play on his desk.
5. Use, "NO BITE" when he is wanting to mouth or chew on things like furniture, people, and expensive electronic equipment.  Push up under his nose with the length of the your finger.
6. Use Model Magic sparingly until Alex is more comfortable with the texture.  Use it to hold up the pop-beads or the pop-bugs.
7. Turn off all lights in Alex's room to sleep.  Even the aquarium.

Action:  Call Dr. M for blood work.  Call B to get copy of Alex's IFSP.  

Thursday, Jan 12.

So, I am in the process of getting Alex on the waiting list for the waiting list to get him in home services and myself some respite care when he is older.  There is this long intake checklist and each time I tick off one of the boxes I get ecstatic!  I am just waiting for his IFSP right now.

I took Alex to Dr. K today.  She is the world's most awesome Chiropractor.  She's been helping me sporadically with Alex, but I am hoping to just incorporate our visits into my therapy mindset.  Call it- Pop Therapy, or Adjustment Therapy.  I am still positive that if she continues to treat him, he will gain more use of his arms and hands.  Something is just blocking that signal.  She said his pelvis is more limber this week- yea!!!

Speech therapy with S. today.  Alex's music therapist E. joined us too.  We set two pictures representing the songs we use in class on the light box.  The first 3 times he picked the left picture.... then S. placed a pic that was not one of his favorites, and he did end up using his right arm to pic the right pic.

Aqua therapy with D.  Alex did a lot of bouncing in the water.  Cracked me up.  He is still reluctant to use his hands too much... This is going on 2 to 3 weeks now.  Perhaps his great gains in gross motor are more pronounced right now and his body is focusing on that.

Occupational Therapy with J.   I love J.  She is always trying new things with Alex to get him to use and make functional those darned hands.  We tried Therapeutic Brushing.  While I think the brushing with the joint compression would be ideal.... I simply can't remember to brush him every 2 hours.  So, on to the next trick.  Therapeutic Listening!  Therapeutic Listening is hopefully going to help.  We will try it for 2 weeks, 2 x's a day for 30 minutes at a time.  J asked me to list 3 to 5 things "sensory" things that I would like decreased.

1. flinching when objects come near his face/head.  I.E. more tolerance to me putting on his shirt.
2. allow his body to rest at night... decrease the number of times he wakes to play.
3. increase the length of time he is willing to hold a toy
4. decrease need to mouth

I will need to remind myself to watch for these things periodically.

Oh, and Dr. M appt at beginning of February!  Love my pediatrician!

Friday, January 13

Alex had class today.  It is a 2 1/2 hour continuous therapy experience....
We start with play centers targeting several skills.  There is a "house play" area, sensory table, pretend play with animals, trucks, trains, dolls and doll houses, a light box exploration, an art project, a drawing/coloring table, a fine motor area.  Next is a speech time where we sings songs and explore objects usually with sign language.  After speech, we have snack.  Following snack time, we go to music.  And at the end of our school day, we go to Physical Therapy.

So with that recap, yesterday we had Alex standing for part of the Centers/Speech time.  The Squiggle Stander allows Alex to have static standing time.  G helped get him set up and he looked really good.
One of Alex's favorite friends brought snack- crackers and cranberry sauce.  (Our teacher makes a snack list with foods we are to bring... they provide an array of tastes, textures, tartness, etc)  Alex can be counted on to like pretty much anything that is brought.  He LOVED the cranberry sauce.
In music, Alex used avoidance again as a way to communicate his preference to E.  Bless her heart, E is so patient with him and just allows him the time he needs to make a choice.  At the end of music, we look at the stars.  Alex knows this is the end of music; he started crying.  During PT, the focus was getting from a seated or kneeling position to standing.  So exciting as Babe was able to hold onto the ladder (which lays horizontal) and pull up all on his own!  Fridays exhaust him, and we went home and both took a nap!


There are so many experiences that the kids and I would never get to experience if Alex wasn't who he is.  The woman who wrote the article about Syd and Alex works at a place called MyUbby.   http://www.myubby.com/.  Her boss has worked out a deal with the magazine and when Melina writes and article, her "subjects" get to make their own blanket!

My bigs were able to help Alex pick out the two fabrics, the color of thread, the font, what to write on the blanket, and the satin border.  We were allowed to go into the machine room and watch the entire process from start to finish.  It was amazing, and we all had such a great time.  The owner's children were there and were amazing ambassadors.  A touching experience to say the least.

Websites I need to keep

http://eyeep.com/
IEP's for kids with vision issues.  Good advice for mom's with regards to IEP's in general.

http://www.theimaginationtree.com/2011/12/top-10-sensory-play-ideas-from-2011.html
http://creativewithkids.com/wp-content/uploads/2011/05/PrintableSensoryActivityList1.pdf
Help in getting my son over his tactile and other sensory issues



MOWAT- WILSON INFORMATION
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172917/

http://ghr.nlm.nih.gov/condition/mowat-wilson-syndrome

http://jmg.bmj.com/content/40/8/640.full.pdf

http://www.ncbi.nlm.nih.gov/books/NBK1412/

https://groups.google.com/forum/?fromgroups#!forum/mowat-wilson-community

http://www.ojrd.com/content/2/1/42

http://www.rarechromo.org/html/home.asp

Day one... the beginning

So, a new year and a new goal for myself.  I need to document Alex's journey and our family's journey.  I was thinking, everyone and their dog has a blog now.... why should I?  In short, we were contacted by a publication  to reflect on how our family has changed because of Alex.  I could think of 100 ways we have changed, thus the blog.

Alex had therapy today with D.  She is so wonderful with him, but I digress.  We began trying out walkers.  I am so new to all of this and frightened to do something wrong for fear of causing a setback.  With my "normal" children I worried, but not about doing something detrimental to them.  The walker we tried today was Kid Walk.

Things I loved:  his hands were free to explore; he doesn't like to hold onto things- so this works nicely; it moves easily; he can sit if he needs to rest; there was chest and hip support

Things I am not sure of:  he liked holding/touching the large wheel; the wheels are so big, getting real close to a table would be hard; he liked sitting; he wanted to jump (typical mo for him though)

We also decided to have him in a stander during class time.  Although his legs are very strong, he needs to work on balance and static standing.

**D would also like for me to tuck his legs under his hips and support him up onto his hands (straight arms) to play.  If he tries to pull all the way up, tip him forward slightly to offset his movement.

So at home, during homework time, I had Alex in his Learning Tower- he was doing his homework.  (hee hee)
Two apps today BrightStart and Tap-n-See Zoo.  Aaron was on the desktop doing math flashcards and Spelling City.  That left poor Syd at the table, across from Alex, working on her math- fractions and double digit multiplication.  Each child was singing, and moving.  Syd says, "Mom, you know what?  He is just the sweetest little thing."  Yes Syd, yes he is.  And so are YOU.