What we did with Brother

This is a compilation of the things we did for the first two months after finding out about Brother’s visual impairment for one of my Facebook groups.

When we first found out Brother couldn’t see, we started talking to him more, putting toys in his hands, and giving him the opportunity to interact with his environment more. – so only toys that made sounds were kept, for example.  He needed cause and effect toys, like this giraffe that plays music when kicked.

Then we made a little room.

The Little Room: The Little Room consists of a metal frame (in our case PVC pipe) supporting three side panels with various textures, a Plexiglas ceiling, and two play bars from which a variety of objects (everyday objects or toys) are suspended. This gives the child the opportunity to experience the properties of objects, to compare different objects, and try out different things to do with the object on his own without adults interpreting that experience for him. Since the objects are stable, it allows the child to repeat his actions with an object as many times as he needs to, at one to two-second intervals, without dropping and losing it. The immediate repetition enables the child to store the information gained from the experiences in his memory.

The Little Room sits on a resonance board.

Resonance Board: The resonance board is a thin plywood panel carefully designed to vibrate to every movement a child makes while lying on it. It enhances the effectiveness of the Little Room, but can also be used alone to encourage play and movement.

 

 

Alex learned where his toys were.  He was happy in his room.  It was orderly.  He learned object permanence.  After several months, it went out to the garage.

The little room is based on the work of Lilli Nielsen, Ph.D. I read some of her stuff.

I read everything I could find online.

some resources:

http://www.tsbvi.edu/program-and-administrative-resources/3276-cortical-visual-impairment-an-overview-of-current-knowledge

http://www.tsbvi.edu/program-and-administrative-resources/3247-the-unique-needs-of-the-visually-impaired-infant

http://www.tsbvi.edu/program-and-administrative-resources/3270-general-considerations-in-working-with-young-children-with-visual-impairments

This is an excellent resource

http://www.wonderbaby.org/

http://www.perkins.org/resources/scout/orientation-and-mobility/infants-and-small-children.html

I just read and read and read. I tried to make as much as I could to give him.

 

more pictures:

Trying squash – he liked it!  Children who are blind can have feeding difficulties.  One suggestion I read was to feed him in his car seat because of the excellent support his body would receive.  We started the intro of squash with this funny looking tool that looks like a binky on the end but with grooves.  So he welcomed it into his mouth, thinking it was a binky, and sucked the squash off.  Then we moved onto the spoon. I consider it a success!

Alex loves his little room!  he coos, babbles, and laughs in there.  He plays with toys – it’s AWESOME!  If he is laying somewhere else, he just lays there.  But in his room, he is alive.  I love it!

and this – movement.  He’s got to move through space to know it’s safe

a month after finding out I wrote this:

For example, I swaddle my babies.  I learned to do that as the girls were in the NICU.  Guess what?  When little ones with CVI are tired, they do repetitive movements – often hitting themselves in the head.  They are searching for their boundaries and they are tired.  Guess what you do for that?  Swaddle them!  Awesome.  I have been doing that for months naturally.  I have only seen Alex do the repetitive movements like hitting himself in the head a couple of times because by the time he’s that tired, he’s usually swaddled, binked, and in bed.  love it!

Another thing that we do now is talk to Alex about everything!  We warn him before we touch him.  We talk through diapering and changing clothes.  We identify sounds and things he is touching.  He has always been a happy little boy, but now that we understand how he is perceiving his world, he is even happier!

I have been told that the reason he isn’t holding his head up is because he is severally visually impaired – there’s no reason to hold up his head, there’s nothing to see.  So we have to do lots of different positioning for him to learn his place in space.  Laying, sitting, and upright.  Since he doesn’t have the trunk or head control for these position, that is a lot of equipment to use.  Guess who already has all the equipment?  We have the little room for laying down(we made that one), the special tomato chair for upright sitting, we have the stander for standing (albeit very, very pink – still struggling with that one.  Becca says we should have gone for the yellow stander.  Oh well.  Real men love pink, right?) (oh, and he loves the stander – the chest strap is at just the right height for teething!)

And introducing braille.  We don’t know if he’ll be able to use braille.  We’ll have to wait and see how his CP complicates things.  And to be totally honest, we have to wait and see how his cognitive function is going to be.  Will he be able to understand braille or will he have to use a specially equipped dynavox?  The answer will come in time.  But I am grateful I already know about dynavoxes and how they can be specially adapted for the visually impaired. 

But if he can use braille, they say to start young, to train the fingers to feel things.  How fun this was to read a book to Alex and move his fingers over the dots.  In this particular book the pictures are also raised.  At first he fought me, but he stopped when he started noticing the shapes beneath his fingers.  I was impressed by that!

 

Alex ear points (orients his head by turning his ears towards sound).  He loves the silly sounds that his Daddy makes.  He loves music.  He is such a sweet little boy.  We all love him dearly!

 

  The piano is a fantastic cause and effect toy!!!  He loves it!

 

 

 

 

 

Checking out textures – always feeling things.

This is as far as he’ll lift his head and not for very long.  Pretty normal with kids with visual impairment, but the PT doesn’t like it!  More tummy time

Since Alex has CVI, there is a lot out there about working to develop/foster/encourage the brain to “see.”  So we got a lightbox and started working with that.

I loved the wubba nubs – easier for him to find his binky

We got more things in the mail for Alex.  Another book in braille plus a book I ordered on CVI written by parents for parents (yea!)  I also got this great bag full of goodies.  It’s fabulous!  We are starting to learn braille.  I have a through j down!  It’ll happen.  There is so much out there to help us learn! 

OT for Alex – Alex is supported in a laundry basket.  I want this boy to sit, so we are stretching his core.

Exposing him to orchestra music – great for brain development!

Brother checking out Becca’s face.  He also like to feel Jason’s beard :)

more movement

With time and practice, he started opening up his hands at the piano rather than keeping them all curled up

Kissing on Didi and he kissed back!