A voice for Jojo: Busy boy as always!

Thursday, August 14, 2008

Busy boy as always!

Wow! This week has been incredibly busy. Just when I think we can't pack anything else into our schedule, we do! We must have had a million errands to run this week. I think that happens as the school year is approaching.........

Dominic had a playdate at the park with a friend and Jojo thought he was also 6 years old. He walked up to the boys, puffed up his chest and grinned the biggest grin I have ever seen. It was too cute. That smile disappeared quickly when Jojo wasn't allowed to climb on the huge play set the boys were headed toward. Having an older brother makes him forget that he is only 2! Oh did we have some tears....

Yesterday Jojo had an appointment with his gastroenterologist (GI doc). He has gained a 1/4 lb since May. Doesn't seem like much but he has gone from below the 5th percentile for weight (a year ago) to about the 10th percentile! Dr. said it is time to make the journey into life without Prevacid. (at least try to and see what happens:) Since he is on a maximum dose we will go from taking it twice a day to once a day. We will see the doc again in December and that is when we will be getting off the medicine completely to see how he does. He thinks a lot of his eating struggles are from having having pain for so long before (the erosions) and then the behavior formed a pattern and he also has sensory and texture issues with food. To summarize he thinks the problem is related more to behavior and less to the GERD right now. I totally agree. It was never pleasant for him to eat and he was in pain and that seems to have carried over to now. He is scared of food. We just have to keep evaluating him and keeping watching his weight to rule out more problems. The doctor was amazed how well behaved and cooperative he was. Especially since it was just about his bedtime. (our appt was at 7pm) Dominic also couldn't have behaved better, he had to come along because Daddy wasn't home.

Today Mommy took him to Kaufman and he had lots of hard work to do. His therapist spent the whole time doing an evaluation of his receptive skills. (He was so far scoring way above his age)We have to finish up that next week and then we will be evaluation expressive language. I'll post his results! We know what a smart little cookie he is, which makes it even more frustrating that he can't talk! It's amazing to see him bond like he has with his speech therapist. He sees her twice a week so I'm not surprised. He is always eager to go.
Hopefully this all makes sense, no time to proofread it.....family needs dinner!

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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