We know now more than ever that it's just him being stubborn about not exploring other drinks in cups. That's what happens with the smart kids. They out smart their parents!
Ahhh pop out of this big boy cup is the best!
Thursday, December 22, 2011
Feeding Therapy Skip Day
My son is in pretty intensive feeding therapy. He has no problem with textures and there is no rhyme or reason to the choices he makes but basically he is just super picky and mostly unwilling to try new things. Unless of course it's chocolate, then we can usually persuade him pretty easily to try a taste. Drinking out of a cup is one of our current challenges. He prefers to drink milk out of his toddler cup and won't drink water or milk out of a regular cup - glass, plastic or otherwise. He will however, drink our pop.Today we were out at Jungle Java and we didn't bring his cup for milk which means he would usually have to wait until we get home for a drink. All the boys said they were thirsty so we decided to get N a pop to see if he would drink it. Water would have been ideal but we knew better than to try. We ordered a pop and...
We know now more than ever that it's just him being stubborn about not exploring other drinks in cups. That's what happens with the smart kids. They out smart their parents!
Ahhh pop out of this big boy cup is the best!
We know now more than ever that it's just him being stubborn about not exploring other drinks in cups. That's what happens with the smart kids. They out smart their parents!
Ahhh pop out of this big boy cup is the best!
Thursday, December 15, 2011
Guest Post: Crunchy,Salty,Tangy,Spicy,Bitter,Sweet
This is a guest post by an inspiring member of "The Special Mommy Club."
Tulpen's blog can be found at http://tulpensbadwords.blogspot.com/ It's SO worth reading!
Owen was around 7 months old when I first tried to feed him. He'd reached the
milestone of holding his head up, so I called up his surgeon and told him I was
going for it.
Gerber Rice Cereal was my choice.
I didn't expect him to play baby bird and open wide for that spoon. He did open wide. He stuck out his tongue and pushed that spoon away from his mouth like he meant
it.
He meant it.
I called in Early Intervention and went on an online fact finding mission. I backed up and away from food and focused on desensitizing his mouth with brushes and knobby things and chewy things.
I read articles aloud to the Early Intervention Occupational Therapist as she did exactly what I'd learned NOT to do to Owen. She force fed him and tricked him and made him even more afraid of food.
I fired Early Intervention.
That winter, the retching started. The Fundo had bundled his
stomach up so tight so that no food could come up. No air could come up either.
Twenty or so times a day he'd retch, minutes at a time, until I emptied his
stomach of food and air with a giant syringe. A few times a day he'd turn
blue.
I kept up with the brushing, poking and prodding, but gave up on actual food.
At 16 months or so, we met Micki, a Speech Therapist with a
specialty in feeding therapy. After a couple months, she had him taking tastes
of purees. At 18 months, he would eat half a jar a day.
Then his stomach
slipped up into his chest and he stopped doing even that. Surgery put his
travelling tummy back where it belonged, but all the progress he'd made was
erased.
Micki had to start from scratch but would never see their prior
success.
Frequently he would throw his food all over Micki, or me, or all
over the room in general. He shattered plates and bowls and toys.
At Owen's three year check in with his surgeon, Owen was licking things;
cookies, crackers, chips, chicken wings even, but no biting, chewing and
swallowing. Rusty assured us that 99% of kids like Owen are tube free
by age 5.
Owen's life had already been lived in the 1% zone, so I
took this to mean we'd have that tube well past his 5th birthday.
Micki gave up on Owen when he was almost 4. She gave us the excuse that insurance wouldn't pay without progress, but I believe that she knew he was out of her league. She was right.
At four and a half, we met Chris (cue angels singing), and I had a
feeling, as Mommy's usually do, that she was The
One.
She admitted that Owen's was one of the more severe cases
that she'd seen. She was confident that she'd get him eating.
She started
from scratch with oral exercises and a reward system that Graham understood and
enjoyed. A behaviorist came to our house to set up a home
plan.
A PLAN. We'd never had one of those
before.
Plans sometimes work.
Within six weeks he was willingly eating purees. Eight weeks and he was eating peanut butter out of the jar. A couple months and he was chowing down Veggie Stix.
She introduced him to every taste and texture. His jaw muscles strengthened. His
swallow improved. He gagged less and less.
I rejoiced over a plate of nachos.
Every week he'd eat more. Actual preferences emerged; tomato sauce, salsa, ketchup
(yes, a culinary theme also emerged), mustard, cheese.
He learned to manage thin liquids without choking, first with a syringe, then sippy cup, straw, and open cup.
Normal meals disappeared from his plate. Chicken nuggets and fries.
Mac & cheese. Lasagna. Grilled cheese and tomato soup.
He ate enough to back off on his tube feedings. He's learned what hunger feels like, and how to make it go away.
He's learned what being too full feels like, and how to avoid that too.
He hasn't had a tube feeding in more than a month.
He's gained over a pound.
Friday was our last visit with Chris. She had a cake for Owen, balloons for both kids.
Gifts were exchanged.
Tears were shed, especially after she opened this framed picture of Owen
Owen didn't understand why we had to hug Chris goodbye, or why Mommy and Chris were crying.
Tulpen's blog can be found at http://tulpensbadwords.blogspot.com/ It's SO worth reading!
Owen was around 7 months old when I first tried to feed him. He'd reached the
milestone of holding his head up, so I called up his surgeon and told him I was
going for it.
Gerber Rice Cereal was my choice.
I didn't expect him to play baby bird and open wide for that spoon. He did open wide. He stuck out his tongue and pushed that spoon away from his mouth like he meant
it.
He meant it.
I called in Early Intervention and went on an online fact finding mission. I backed up and away from food and focused on desensitizing his mouth with brushes and knobby things and chewy things.
I read articles aloud to the Early Intervention Occupational Therapist as she did exactly what I'd learned NOT to do to Owen. She force fed him and tricked him and made him even more afraid of food.
I fired Early Intervention.
That winter, the retching started. The Fundo had bundled his
stomach up so tight so that no food could come up. No air could come up either.
Twenty or so times a day he'd retch, minutes at a time, until I emptied his
stomach of food and air with a giant syringe. A few times a day he'd turn
blue.
I kept up with the brushing, poking and prodding, but gave up on actual food.
At 16 months or so, we met Micki, a Speech Therapist with a
specialty in feeding therapy. After a couple months, she had him taking tastes
of purees. At 18 months, he would eat half a jar a day.
Then his stomach
slipped up into his chest and he stopped doing even that. Surgery put his
travelling tummy back where it belonged, but all the progress he'd made was
erased.
Micki had to start from scratch but would never see their prior
success.
Frequently he would throw his food all over Micki, or me, or all
over the room in general. He shattered plates and bowls and toys.
At Owen's three year check in with his surgeon, Owen was licking things;
cookies, crackers, chips, chicken wings even, but no biting, chewing and
swallowing. Rusty assured us that 99% of kids like Owen are tube free
by age 5.
Owen's life had already been lived in the 1% zone, so I
took this to mean we'd have that tube well past his 5th birthday.
Micki gave up on Owen when he was almost 4. She gave us the excuse that insurance wouldn't pay without progress, but I believe that she knew he was out of her league. She was right.
At four and a half, we met Chris (cue angels singing), and I had a
feeling, as Mommy's usually do, that she was The
One.
She admitted that Owen's was one of the more severe cases
that she'd seen. She was confident that she'd get him eating.
She started
from scratch with oral exercises and a reward system that Graham understood and
enjoyed. A behaviorist came to our house to set up a home
plan.
A PLAN. We'd never had one of those
before.
Plans sometimes work.
Within six weeks he was willingly eating purees. Eight weeks and he was eating peanut butter out of the jar. A couple months and he was chowing down Veggie Stix.
She introduced him to every taste and texture. His jaw muscles strengthened. His
swallow improved. He gagged less and less.
I rejoiced over a plate of nachos.
Every week he'd eat more. Actual preferences emerged; tomato sauce, salsa, ketchup
(yes, a culinary theme also emerged), mustard, cheese.
He learned to manage thin liquids without choking, first with a syringe, then sippy cup, straw, and open cup.
Normal meals disappeared from his plate. Chicken nuggets and fries.
Mac & cheese. Lasagna. Grilled cheese and tomato soup.
He ate enough to back off on his tube feedings. He's learned what hunger feels like, and how to make it go away.
He's learned what being too full feels like, and how to avoid that too.
He hasn't had a tube feeding in more than a month.
He's gained over a pound.
Friday was our last visit with Chris. She had a cake for Owen, balloons for both kids.
Gifts were exchanged.
Tears were shed, especially after she opened this framed picture of Owen
Owen didn't understand why we had to hug Chris goodbye, or why Mommy and Chris were crying.
He didn't understand what a huge accomplishment he'd made.
Like any other kid, he just wanted to get home and play, and eat
more cake.
more cake.
And like any other kid, he got up the next morning and ate a bowl
of broccoli for breakfast.
of broccoli for breakfast.
Tuesday, December 13, 2011
My Teenage Toddlers
Another luxery of special needs (yep I said luxery) is that the preschool bus drives my son home and drops him off at the end of the driveway. It took me a over a year to let him ride the bus and I only have him ride one way but I would be lying if I didn't say that it is pretty heavenly not having to do the hour drive roundtrip. He gets home at the same time everyday but I always check 5 minutes early in case one of the other kids is out and they are running ahead of schedule. About two weeks ago the bus driver who is a doll, started having him head to the door when I wasn't out there waiting for him and now he just walks right to the door while she watches him. I have said a few times to my family that if he ever got all the way to the door I don't know if he would know what to do. I mean he knows you knock on a door but that doesn't mean that he would do it. Today I was sitting on the couch and heard the door slam shut. I jumped up because it was ten minutes before bus time and I wasn't expecting anyone else. When I looked in my front hall I saw my two teenagers standing there (ages 3 and 5). My big boy was taking off his backpack etc. and the little one had just let him in the house before I even realized that he was home. Apparently, the little one heard my school boy knocking on the door and let him in while his clueless mommy who will now be watching television on mute, didn't know a thing about it. I opened the door and waved to the laughing bus driver who was waiting for me to check in. I maintain, ya can't underestimate these kids, any kids. They sure do grow into teenage toddlers fast!
Thursday, December 8, 2011
There is always an upside..even to pain
Today I noticed my son crossing his legs clearly trying to avoid wetting his pants. This really was great because he has not yet mastered potty training completely. He now holds it for hour vs minutes but still he isn't interested in stopping what he is doing to go or tell someone he has to go thus leading to accidents etc. I was so thrilled he was trying to hold it but I wanted to run him to the bathroom and in my mini tizzy he was caught off guard and dropped his ipad on my toe. Can't lie, I wanted to cry like a baby. It hurt so much but honestly we had to get out of the house to get to therapy on time so crying had to take a back seat. I was trying not to make a huge deal of it but I was really hurt. I didn't say much but the next thing I know my baby boy was crying and saying "I'm sorry I'm sorry!" I almost fell over. Pain went right out the window. I was so excited that he expressed empathy without me even telling him that he had hurt me. It was really amazing I can't say it enough. He really is moving right along. As soon as I told him it was alright and that I was fine and thanks for saying sorry he was fine too. There is an upside to every situation, even a half broken toe ;).
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