Gotcha!!

Many kids with special needs have little or no communication of any form so people often assume that these kids have a limited understanding as well.

I hereby shatter these illusions with the two following stories:

1. On sunday i stood at the kitchen counter preparing Yossi's morning medicine while he sat next to me in his chair with his nebulizer mask and a toy to distract him (so the mask will stay on). i glanced over to check on Yossi and i find his watching intently  while he slowly and deliberately pulled the mask away from is face. when i made eye contact with him, he burst out laughing!! GOTCHA!!
(thankfully he put the mask right back in place)

2. Shabbos mornings we don't have to rush anyway so its snuggle day in the zeichner household. Yossi was chilling in my bed and i was stroking his face and rubbing his back (fyi he LOVES foot rubs). my normally wiggly child laid very still with eyes closed for many long moments.  in surprise i commented to Dov that Yossi seemed to be falling asleep. As soon as he heard that, Yossi's eyes flew open and he laughed long and loud!! GOTCHA!!


 I've always treated Yossi as a regular kid as far as comprehension is concerned so I'm used to interpreting Yossi's body language. people who are around him less often are not. i love watching people's delight when they see him respond appropriatly.  not that he has to prove anything to the world but its just clear confirmation that he is taking in everything around him.  I'm absolutely enjoying this new stage where his thought process has  developed and he can understand and create humor. even though  he understands perfectly fine ,his comprehension level still develops below that of his peers because of his challenges. knowing that, makes these moments so much sweeter.  Baruch Hashem for the little things, they are a big deal!!

The Zeichner Hotel

there's this house on our street
that does not look unique
nondescript and plain
its just like the others, its exactly the same

but inside its a different scene
the likes of which I've rarely seen
guests from israel just landed
the keys to their room they are handed

now its friday well past noon
our  next guests are coming very soon
so we change the linens in the room
while singing a lively shabbos tune

the boss now vacation bound,
friends come in to watch the grounds
of course they need a place to sleep
so on the bed we put fresh sheets

then for the weekend we'll host family
so we prepare the room happily
we put fresh linens on the beds
for a comfortable place to rest their heads

on shabbos day,
 kids come to play
all are ushered inside
when the snack bar open wide
so the kids can choose their treats
and hungry moms can eat in peace

its shabbos again
what better way to spend
if not with sleepover friends
do you a see a trend?

tishrei is coming, do you hear,
suitcases rolling everywhere?
guest arrive from far and near,
do you have a bed to spare?

for each yomtov separate guests
the beds must look their best

seminary girls pop over
on their homebound stop over
while waiting for the connecting bus,
why not stay with us?


the pile of laundry now over my head
 i just want to lie down in my bed
the linens never see the shelf
Thank G-d i have help!

the linens are so comfy
and the food is so yummy
they come from worldwide
our door is open wide
welcome to the Zeichner Hotel



****This post is intended solely as a humorous take on the rapid turnover of guest we sometimes have. this post is not intended to suggest that our guests are imposing.  we are so thankful that we are blessed with space to host guests. because it is hard to get out with yossi, hosting our friends has given us the ability to enjoy  shabbos and yomtov like everyone else. Thank you to all of our amazing friends! we're praying for an upgrade so we can host you all more comfortably!****

perspectives II

Today i was reminded again, how fortunate i am to have a great support system at home, at school, and at work.

My boss assigned me a project and I told her that i'd like to take care of it next week once Yossi is back in school.

Her priceless reply: "no problem, I'm glad yossi is well and heading to school"

and she's right. with all moms (myself included) more than ready to send their kids back to school, I'm very very lucky that Yossi is healthy and able to attend.

Here's to many school days for Yossi - Happy Second Grade! :)

First day of school

Long ago? Memories.

Dov and i were looking at pictures on his phone today. we came across pictures of  yossi in the hospital and they seem like such a distant memory. funny how its only been six weeks but it feels like an eternity.  that the hospital which consumed our lives for so long , does not even get a single thought in my day. we're so busy being a family again that we have hardly noticed the time go by. Thank you Hashem for giving  us health, we're enjoying every second of it!

unBEARably cute!!

Hope

Hope comes in many shapes and sizes
Hope is for all types of things

Hope is for the blessings we want G-d to give us
Hope is for the things we want to accomplish

Hope helps the present become the future
Hope is rejuvenating

Hope reminds me of its presence, when i take a step back
Hope reminds me of how far we've come when look at my life from the outside


Here's hoping i can bottle up some hope and bring it back from vacation with me
I'd sure like to hold onto  this feeling every day:

The hopeful reality of normal family life that will hopefully settle in our home permanently

perspectives

Yossi continues to be stable and healthy after having  lowered the prednisone twice and replacing it with valium! he is holding steady in the range of 2-7 seizures a day..

from my end: zero seizures is better than a few. but  my friend says that a few is way better than many in a day.
i guess its a matter of perspective. and attitude. we've been on edge for so many months, that im dismayed at any little setback.. it has been the case in the past that any little setback, throws the train completely off the tracks. i dont want to go to that place again. ever. running back and forth to the hospital for months on end, barely making it through the day, and watching Yossi want and struggle with activities he normally performs.

Now Yossi is happy and vibrant and constantly laughing. he is crawling more often on all fours (on his own) and making more progress in steps torwards independant walking. so i guess a few seizures isnt too bad.

still,  we still have a long way to go before we say goodbye to prednisone.  so far we've gone from 30mg to 27.5 mg, to 25mg.  we've got to go super slowly because his seizures lurk just around the corner. its a very delicate balance. we've been down this road before. several times in fact. im just hoping that this time we can make it all the way.

So forgive me if im a bit gun shy but i'll try to keep my hopes up!
Maybe i'll just have to watch this video again and again until im in a better mood!
(Yes, i finally caught Mr. Giggles Giggly-face on camera)

Friends and Firsts

Here's another reason that i love my friends so much: ive last posted about a week ago and several people have already told me that they are anxious for more posts! im so lucky to have so many wonderful friends, that are always here for me and always waiting to hear good news!

im sorry that i couldnt write this past week, i was too busy planning this upcoming week's vacation. thats right- a real vacation! just me and dov on our own without yossi. in addition to school we have arranged 4 different people to take shifts with Yossi so that we can have a few days to recharge. thats huge amount of preparation but so worthwhile! i shudder to think about all the prepations that an extended trip would entail. for now i'll just be happy with several days away. im so lucky to have friends that are willing to help with yossi.

this week was also a week of  firsts:
-fits of giggles all the time
-getting off the couch to a standing position on his own,
-getting onto all fours unasisted and actually crawling several paces (he's also using this talent to try and figure out how to escape his crib)

Yossi has also continued  progress this week in:
one handed walking (freehand and using the wall for support),
 navigating stairs
bike riding
picture communication system

the sun is defenitly out this week :)

Today he did pretty good with toileting; using the bathroom almost every time and even telling us verbally once that he needed the bathroom. i wish i could figure out how to get him back on track, since he has started feeling better, this is the one thing that is still lagging behind. i cant wait to get him back into underwear.

Yossi had under 5 seizures per day this week. on thursday night we increased the dose of valium and right away lowered the prednisone a little bit more. BH he seems to be tolerating the medication changes really well this time. im hoping that this week he continues to do well, so we can keep taking steps to get rid of the prednisone forever!