A voice for Jojo: Is it Friday yet?

Wednesday, February 25, 2009

Is it Friday yet?

I can't believe it is only Wednesday, what a crazy week! I think it always feels like that after a break.

Jojo was Mr. Giggles at therapy today. It is so nice to see him like that since he is soooo serious most of the time. Jenny is started to be a little tougher on him when it comes to clarity. She is not letting him get away with not hearing EVERY sound in a word anymore. We are thrilled how much he is starting to talk......lots of phrases and some sentences now. It is also very frustrating because unless it's a single word or short phrase, we are having lots of trouble understanding him. Oh, it is so hard because I ask him to repeat himself a few times and then he is frustrated, and all the while he is looking at you knowing you don't understand him. Yesterday it was Lucky Charms he wanted and I heard "icky eems" over and over again. Today he was sitting on the step by the front door while I was getting my things ready to go. Instead of sitting on the step he wanted to wait on the rug. He said "on a ug" And while in a hurry to get out the door this morning it took a couple of minutes to figure out what he was trying to tell me. I am NOT complaining, yes it is better than him not speaking like before, however it is very time consuming and frustrating and another obstacle to overcome. The encouraging part is that his single words are getting more clear, so there is hope!!!

Yesterday when we were leaving Beaumont we walked by a lady near the entrance of the building and he said "scooze me" A two year old with such wonderful manners, I had to share!! It is nice to hear some of the things that go on in that little head!!! We passed my friend's parents house where I drop their daughter off after school and Jojo recognized it and said, "who dat house mommy?" He also has started yelling out "somebody help me!" once he is in bed for the night and does it every once and awhile until he falls asleep. No tears, just waits patiently for someone to fall for it! There is another story from yesterday at therapy, but it involves poop and wouldn't be nice to share. (it is funny though!)

Jojo has his first dentist appointment tomorrow. I have tried twice before and both times have had to cancel because he was sick. He is not sick all that often so that was an odd coincidence. I have a couple of concerns about his teeth. One of which is his tooth enamel is visibly worn away and his teeth almost have a translucent look on the edges. Since he has such bad GERD maybe that is why. We shall see.

Well our homework for this week is working on "W" sound again!! Also he is having trouble blending the "Y" sound "you" is "ooo" and blowing his air out for an "H" instead of "hat" he says "at" We also have to remind him not to drop those beginning consonants and other sounds. He cannot pronounce "L" or "R" yet so those words are still difficult to understand. "right here" sounds like "ite ah" but in the right context may be understood by others. He did some great work this week!

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I am the Child

~I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable...I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities;the opportunity to explore you spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to you many questions with no answers. I am the child who cannot talk.~

Hearing Your Silence

Understanding Apraxia Hearing Your Silence (For All Children with Childhood Apraxia of Speech) by Donald Robin, Ph.D., CCC-SLP

We don't understand when we hear your silence
We can't see behind your frustrated eyes when you plead for our attention
We are unable to feel your awkwardness when you try to speak and the wrong sounds emerge
We cannot be inside you to will your tongue to move when it struggles to find the roof of your mouth
We don't understand the fear that consumes you when you are on the playground when you should be having fun
We are not privy to your brain that creates a world of words only to have your muscles stop their meaning
We do not hear your mind communicating freely only to have us look quizzically and ask for repetition
We cannot sense your joy at moments of clarity only to have it rapidly disappear again and again
We do know who you are when you look into our eyes
We can hold you tightly when your fists clench and tears fill your vision
We will struggle with you each day and night when you practice your speech sounds with great deliberation
We are proud of your trying when we might just give up
We share with you your pain when your mouth is tired and slow
You know that we will love you when you are little and when you grow
You know that we will be there for you when all seems dark and cold
You know that you are special and what you want to say
You know you are our children and who you are each day
You know your world is full and how to find the way
You know we hear your silence
You know, we hear your silence
You know we hear your silence
(July, 2004 on the occasion of the First National Apraxia-KIDS Parent Conference)

Apraxia

Jojo has oral and verbal apraxia. His brain knows what he wants to say, but there is a road block somewhere between his brain and his mouth. As hard as he tries it does not come out or come out correctly. He not only has trouble making speech sounds but it also affects the non speech movement of the lips, jaw and tongue. He can't pucker his lips to blow or kiss, can't smile on command or move his tongue certain ways. The fact that he has hypotonia also contributes to his oral/motor problems. His muscles all over his body lack tone including his mouth and cheeks. Apraxia cannot be looked at as just a speech delay, because it is not. It is a neurological condition and without proper treatment he may never speak. Even when some apraxic children do speak they are not able to be understood by others. This means there is a very long road ahead for us. His neurologist told us that the hope is for his brain to create new pathways to transmit the message it is trying to send. The hypotonia (low tone) and sensory integration issues are found a lot of times to accompany apraxia. Imagine if you were trying to speak and you couldn't how frustrating that would be. His understanding and cognitive ability have tested far beyond his age, so he knows what everyone else is saying and gets frustrated and sad because he can't speak. My heart breaks for him.

My sweet boy

Through it all he has never been a complainer. He is the sweetest 2 year old you will ever meet. He is kind, funny, smart and loves to play and share. I am amazed at him everyday. I have learned important lessons on this journey with him that will better me for the rest of my life. He has taught me to give more when I didn't think I had it in me. He has taught me that a small step of progress is a glimmer of hope to continue with these (at times) crazy beyond belief days. He has taught me that there is always hope and prayer to give you something to hold on to. He has taught me compassion. I truly look at others facing a challenge differently. I am his advocate and he has taught me to fight for him, because nobody else will. He has taught me to go with my gut, to never be satisfied with a wait and see, to seek out answers when your instinct tells you to. Most of all I've realized how blessed I am to have him and I thank God everyday for choosing me as his mom.

Welcome to Holland

WELCOME TO HOLLAND
byEmily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A voice for Jojo