Simon talks a lot. He can finish the sentences in dozens of books. He knows most colors and can correctly identify a hexagon. He can count. He requests different songs from a 50+ play list. He knows a lot of things.
Still...
We sit down this afternoon for our Mid-day meal. It's our regular therapeutic meal and usually the one time a day when I can count on Simon to sit and play with food for at least 10-15 minutes. He's just come home from his Special Day Class and almost always is hungry, asking for different things to 'eat'. I have his chicken nuggets, a mini, taco, some spicy ketchup, and of course his beloved gherkins and soy sauce, all ready to go. Each of these items have been specifically named and requested by him. We have juice and straws ready to go.
He climbs into his chair all by himself and I am expecting another food play session just like any other. I strap him in, push his chair close to the table and walk the 10 feet into the kitchen to get his pump and food bag.
Less than 15 seconds later I return to the table and hear "I'm finished. I'm done."
It's not the first time that he's done that; gotten settled only to immediately be done.
It's a little unusual at this time of day especially after asking for such specific and historically favorite treats.
Again "I'm fiiiiiiiineeeeeeshed. I'm doooooooooone."
Of course the feeding therapist in me kicks in and knows that we 'have' to at least get a few bites/licks/swallows in before we leave the table.
I begin the cajoling and bargaining that are also as familiar as the chicken nuggets and gherkins at the table.
I am surprised at how quickly he is moved to tears and begins what seems like truly anguished cries.
I take internal inventory and wonder just how much I should push it.
It's really more like a split second conversation that goes on in my head during which time I am watching my son turn red in the face with tears streaming down and of course come to the realization that it's not worth it.
So I begin the ending-the-table-time ritual of simply kissing or licking our food goodbye. It's something that we always try to do and are usually successful at ending our meal on a high note regardless of how many bites or licks or swallows remain at the table.
Nope. The boy is now almost in hysterics, crying out, pleading with me to me done and we are less than 90 seconds into what is usually a 15 minute lovely food play time. What is going on? I am torn between frustration (another meal opportunity down the drain) and heartbreak at watching my son be so distressed.
And then I see it.
I look down and notice that Simon's right thumb is caught in one of the plastic clip loops on his high chair. It's twisted and red from being pulled at and only caught tighter.
I help him disengage his thumb from the vise and hold him while he cries into my shoulder.
His fucking thumb was caught and hurting him like the dickens.
And he can't tell me because he doesn't have that piece of expressive language. He can't even say "Ow" or "my thumb".
His thumb is red and throbbing and my heart is hurting.
I know years from now I will laugh at how there once was a time when....
Just like I laugh now at the time when we had this boy that didn't say more than two words (Hi and Fish) and look at how he doesn't stop talking for more than two minutes.
Still.
He has a significant language delay. I'm not asking that he say "Um, Mom, my thumb is stuck in this buckle and I can't get it out and the way that I've tried has made it even more stuck. So now it really hurts and if you could help me, that would be great. In addition, Mom, I think that this experience has thrown me enough that I'd really like to take a break before working on my eating so if you could just pause the pump feed, that would be spectacular."
No, I'd just like a simple "help me" or "owwww" or "my thumb". Just 'thumb' and/or 'help' would do.
Aaaaaaaaaaaaaaaaaaaaaaaaaaaaagh. For the boy that has a heart condition with so many possible symptoms, language is key. How he is feeling and able to communicate that is key.
Key. Doesn't even begin to touch how important it feels to know what Simon is feeling. Essential. Core. Necessary. Salient.
I think any parent would relate. Especially during that amazing toddler/pre-school time when they clearly have more thoughts and feelings than they have words for. (I hear for some people this goes on for decades).
When you have a child that has language/developmental/medical concerns this divide is so much harder.
I remember when Simon didn't really talk but had Mama down. It was amazing to watch him get it. I was so excited for him to be able to name Jaime and have her get that feedback. I waited for months before I got my 'Mommy'. The wait was excruciating.
This wait is excruciating. This wait for any sense of pragmatic and expressive language.
Excruciating.
Especially when it involves twisted almost broken digits.
And what I try not to do is go to that heart place. That next level down where it's not just about a thumb caught in a buckle. Where it's a chest pain, or fatigue not just based on a lack of nap. Where it's nausea or shortness of breath that feels different than too much tube feeding all at once or trying to run too fast or hard. Where it's a sweat but not from warm weather or having too many clothes on.
I try not to go there.
Some days I'm more successful than others.
And I just want the kid to say "Help me Mommy" or just "ouch".
And I'll be there.
In a heartbeat.
Still...
We sit down this afternoon for our Mid-day meal. It's our regular therapeutic meal and usually the one time a day when I can count on Simon to sit and play with food for at least 10-15 minutes. He's just come home from his Special Day Class and almost always is hungry, asking for different things to 'eat'. I have his chicken nuggets, a mini, taco, some spicy ketchup, and of course his beloved gherkins and soy sauce, all ready to go. Each of these items have been specifically named and requested by him. We have juice and straws ready to go.
He climbs into his chair all by himself and I am expecting another food play session just like any other. I strap him in, push his chair close to the table and walk the 10 feet into the kitchen to get his pump and food bag.
Less than 15 seconds later I return to the table and hear "I'm finished. I'm done."
It's not the first time that he's done that; gotten settled only to immediately be done.
It's a little unusual at this time of day especially after asking for such specific and historically favorite treats.
Again "I'm fiiiiiiiineeeeeeshed. I'm doooooooooone."
Of course the feeding therapist in me kicks in and knows that we 'have' to at least get a few bites/licks/swallows in before we leave the table.
I begin the cajoling and bargaining that are also as familiar as the chicken nuggets and gherkins at the table.
I am surprised at how quickly he is moved to tears and begins what seems like truly anguished cries.
I take internal inventory and wonder just how much I should push it.
It's really more like a split second conversation that goes on in my head during which time I am watching my son turn red in the face with tears streaming down and of course come to the realization that it's not worth it.
So I begin the ending-the-table-time ritual of simply kissing or licking our food goodbye. It's something that we always try to do and are usually successful at ending our meal on a high note regardless of how many bites or licks or swallows remain at the table.
Nope. The boy is now almost in hysterics, crying out, pleading with me to me done and we are less than 90 seconds into what is usually a 15 minute lovely food play time. What is going on? I am torn between frustration (another meal opportunity down the drain) and heartbreak at watching my son be so distressed.
And then I see it.
I look down and notice that Simon's right thumb is caught in one of the plastic clip loops on his high chair. It's twisted and red from being pulled at and only caught tighter.
I help him disengage his thumb from the vise and hold him while he cries into my shoulder.
His fucking thumb was caught and hurting him like the dickens.
And he can't tell me because he doesn't have that piece of expressive language. He can't even say "Ow" or "my thumb".
His thumb is red and throbbing and my heart is hurting.
I know years from now I will laugh at how there once was a time when....
Just like I laugh now at the time when we had this boy that didn't say more than two words (Hi and Fish) and look at how he doesn't stop talking for more than two minutes.
Still.
He has a significant language delay. I'm not asking that he say "Um, Mom, my thumb is stuck in this buckle and I can't get it out and the way that I've tried has made it even more stuck. So now it really hurts and if you could help me, that would be great. In addition, Mom, I think that this experience has thrown me enough that I'd really like to take a break before working on my eating so if you could just pause the pump feed, that would be spectacular."
No, I'd just like a simple "help me" or "owwww" or "my thumb". Just 'thumb' and/or 'help' would do.
Aaaaaaaaaaaaaaaaaaaaaaaaaaaaagh. For the boy that has a heart condition with so many possible symptoms, language is key. How he is feeling and able to communicate that is key.
Key. Doesn't even begin to touch how important it feels to know what Simon is feeling. Essential. Core. Necessary. Salient.
I think any parent would relate. Especially during that amazing toddler/pre-school time when they clearly have more thoughts and feelings than they have words for. (I hear for some people this goes on for decades).
When you have a child that has language/developmental/medical concerns this divide is so much harder.
I remember when Simon didn't really talk but had Mama down. It was amazing to watch him get it. I was so excited for him to be able to name Jaime and have her get that feedback. I waited for months before I got my 'Mommy'. The wait was excruciating.
This wait is excruciating. This wait for any sense of pragmatic and expressive language.
Excruciating.
Especially when it involves twisted almost broken digits.
And what I try not to do is go to that heart place. That next level down where it's not just about a thumb caught in a buckle. Where it's a chest pain, or fatigue not just based on a lack of nap. Where it's nausea or shortness of breath that feels different than too much tube feeding all at once or trying to run too fast or hard. Where it's a sweat but not from warm weather or having too many clothes on.
I try not to go there.
Some days I'm more successful than others.
And I just want the kid to say "Help me Mommy" or just "ouch".
And I'll be there.
In a heartbeat.
