Sometimes when I am making Hayden something to eat, I just don't seem to prepare it fast enough. I can be proactive and begin putting whatever it is together maybe a half hour before I think he'll ask for it. But when he stands too close to the stove, or too close to a knife, or some place that is inadvertently stalling me, I wish I could wave a magic wand and make some sort of baby gate appear around myself for a few minutes.
I think other Moms would say that is just part of being a mom. Moms are everything (or should I say everyone) from short-order cooks, chauffeurs, and personal assistants, to nurses, maids, and personal shoppers. I am all of those people too, although the maid part depends on the day.
From the time that Hayden was in Early Intervention (EI) and we educated ourselves, and made phone calls, and fought to increase his measly five hours of therapy a week to NINETEEN... and fast-forward to starting school when there were budget cuts and staff changes... I had to become our own professional Advocate.
When it was time to coordinate schedules for the 9 EI therapists covering 5 different therapy areas, I had to become an expert Planner.
In the years to follow, as I carefully orchestrated every single week of Hayden-coverage between me, my husband, our jobs, babysitters, grandparents, daycare, and school... I would put any A-list celebrity Assistant to shame.
By now I could act the part of a Physical Therapist, Speech Therapist, Occupational Therapist, or Special Educator. I could write a thesis on ADHD, hypotonia, apraxia, and exotropia (although I wouldn't want to). I'm pretty sure I hold a degree in behavioral issues, and I most definitely have my Masters in sensory processing disorder.
That is not even counting the amount of appointments, consults, observations, and paperwork that comes with the territory. Forms, evaluations, surveys, questionnaires, more forms, medical history, pregnancy details, outline of milestones, more forms, examples of his reaction in scenarios A, B, and C... or his understanding of D through F... will he eat foods G through M...
Yes, there exists an insane amount of paperwork with personal data on my son. And he's only been in this world for seven years.
But sure, you can call me a mom. After all when it comes down to it, I am simply the parent and caregiver of my own offspring.
Clouds, May 2010
Wednesday, June 27, 2012
Sunday, June 24, 2012
s-e-v-e-n
I've missed recording a bunch of updates because things seem to be happening very close together lately.
Last week I tried giving him his medicine one day. I tried twice and it failed twice.
The medicine is in the form of a patch, which was our final solution since the other medicine was not available in an extended-release in the liquid form. The reality of getting a capsule in him is non-existent. Everyone, including doctors that we spoke with, said we should just empty the capsule into yogurt or juice or something. Sounds simple?
1. Hayden will not eat yogurt-- not really. Certainly not to the point that he would get an entire dose of medicine in. He might taste it but that would be the most to expect. Same goes for any similar substance. Heck, I could put a tub of creamy whipped topping in front of him & he would not care less about how much sugar & yumminess is in there. He would not touch it because of the texture.
2. In theory, we could try applesauce because he likes it. But he will never eat (or drink) anything on command. He would never taste something if you told him to try it, or if you said it's delicious, or if you said, "take a bite of this & it will turn you into a car."
3. Speaking of drinks... H is a no-juice kind of guy. Or milk for that matter. (Tried sneaking an antibiotic in his milk when he was 3, out of desperation, and that was the last time he ever trusted "milk" from his parents.) We could even flavor it with all the chocolate or strawberry syrup in an entire bottle & he still wouldn't be interested. He likes what he likes, and what he likes is water. Just water.
So, we got the patch. And I applied it right between his shoulder blades since that's the only place I could think of that he shouldn't be able to reach it. Thought wrong. I guess I conveniently forgot that another side effect of fragile x is hypotonia.
But I humored myself and tried again, and it failed again. At least the first time he managed to peel it off, he told me he was throwing it out. The second time, he was much more sly about it and I found the patch crumpled up on the floor. Having no idea how long it had been there, of course.
In other news, the big guy is now 7 years BIG!
I was taking video of him riding around the yard in his new battery-powered dune rider (I think it's called).
In the first video I was coming around the corner with the camera and he was so proud, and he yelled, "Hi Mommy!"
It's about 30 seconds and I must have watched it 20 times already. I waited so SO many years to hear him say my name that it still sounds new and it still sounds miraculous.
In the second video, in a matter of about 20 seconds he does three pretty amazing things... First he says, "Go Hayden!" because he is so proud of his driving, as he should be :)
Then, he continues to cruise across the yard with one hand by his ear pretending like he's talking on the phone (which we corrected him from doing and he thought it was funny).
And last, he comes to a stop and he actually cheers for himself and claps.
It is one thing to witness a child develop and progress, and you have so much pride built up in their achievements. I would expect that... you are the caregiver and you remember every step of the way.
But when a kid recognizes their own success and you can literally see how proud they are-- of themselves-- it is just absolutely beautiful to see that kind of self worth.
That means more to me than anything at which Hayden differs from a typical peer, because I don't even know how I would begin to teach him that if he didn't feel that way on his own.
Wednesday, June 6, 2012
june, so far
Believe it or not, we are still in the process of figuring out his medication. The specific brand that was recommended to us, is not available in the liquid form in the extended release. Although the capsule can be opened & mixed in with something, there is nothing that Hayden will ever eat or drink on command. (Unless possibly we could conjure up some medicated munchkins.)
The pediatrician has now suggested a different medicine with the same, or similar, active ingredient. It is available in patch form so I am hoping with all hope that this works.
To Be Continued...
In other news, Hayden had his camp visit over the weekend. I am not sure he fully understands that he will be spending his day there, and the fact that it's not until near the end of the summer could be confusing. However we wanted to begin introducing him to the place, and wanted to make sure that his babysitter/ soon-to-be shadow counselor was there as well. So at least he would associate that with a place where she is and have that familiar face. She actually missed part of her prom weekend because she was there for training that day. I feel as bad as I do grateful.
We return for camper orientation at the end of the month. It's going to be busy with a lot of campers and siblings and parents, and the director even went so far as to use the word "chaotic". But we do want him to see the camp with kids having fun there.
In the meantime, in other news, the behaviorist came for a consult yesterday evening with his K teacher. As part of Hayden's summer program, we will have two visits a week for a behavioral consultation to help with such skills as carrying over toileting success at home. They visited for an hour and a half and we had the opportunity to discuss all of the challenges as of late, and see how we might be able to help Hayden focus, and make decisions, and so forth. In general, any technique to sort of counteract the disorganization.
And of course he complied with sitting on the toilet TWICE while they were here, with one success.
I can do nothing but shake my head.
The pediatrician has now suggested a different medicine with the same, or similar, active ingredient. It is available in patch form so I am hoping with all hope that this works.
To Be Continued...
In other news, Hayden had his camp visit over the weekend. I am not sure he fully understands that he will be spending his day there, and the fact that it's not until near the end of the summer could be confusing. However we wanted to begin introducing him to the place, and wanted to make sure that his babysitter/ soon-to-be shadow counselor was there as well. So at least he would associate that with a place where she is and have that familiar face. She actually missed part of her prom weekend because she was there for training that day. I feel as bad as I do grateful.
We return for camper orientation at the end of the month. It's going to be busy with a lot of campers and siblings and parents, and the director even went so far as to use the word "chaotic". But we do want him to see the camp with kids having fun there.
In the meantime, in other news, the behaviorist came for a consult yesterday evening with his K teacher. As part of Hayden's summer program, we will have two visits a week for a behavioral consultation to help with such skills as carrying over toileting success at home. They visited for an hour and a half and we had the opportunity to discuss all of the challenges as of late, and see how we might be able to help Hayden focus, and make decisions, and so forth. In general, any technique to sort of counteract the disorganization.
And of course he complied with sitting on the toilet TWICE while they were here, with one success.
I can do nothing but shake my head.
Tuesday, May 29, 2012
wow for tuesday!
Most days at school have been going very well with toileting. He sits about every half hour, and even better, he averages maybe an accident a day. That's down from, I don't know-- basically many pairs of soiled pants coming home from school every day.
Today he had another one of those 'wow' moments :)
Keep in mind, afternoons are the more challenging part of the day in terms of toileting because it's a little less predictable & there are more distractions. However, today, when his afternoon Aide asked him if he had to go to the bathroom he actually (1) answered "yes", (2) sat on the toilet, and (3) PEED! Maybe that should count as 3 'wow' moments.
Even though the carryover is not going as well at home in terms of the frequency that he will sit on the toilet, he absolutely understands when he has an accident & is more consistent about saying so. I think (I hope) success at home will be next, and then elsewhere. I imagine it being quite a long time before we're out at a restaurant for example, & he actually tells us when he needs to go, etc. But as one of my dear friends said (way back) when all of this started, "Rome was not built in a day."
In other news, following that last visit to the specialists we narrowed down to a treatment to finally try.
This week I'll be getting his new prescription filled which will hopefully help manage his ADHD. (In the meantime, this nasty humidity is helping...)
Today he had another one of those 'wow' moments :)
Keep in mind, afternoons are the more challenging part of the day in terms of toileting because it's a little less predictable & there are more distractions. However, today, when his afternoon Aide asked him if he had to go to the bathroom he actually (1) answered "yes", (2) sat on the toilet, and (3) PEED! Maybe that should count as 3 'wow' moments.
Even though the carryover is not going as well at home in terms of the frequency that he will sit on the toilet, he absolutely understands when he has an accident & is more consistent about saying so. I think (I hope) success at home will be next, and then elsewhere. I imagine it being quite a long time before we're out at a restaurant for example, & he actually tells us when he needs to go, etc. But as one of my dear friends said (way back) when all of this started, "Rome was not built in a day."
In other news, following that last visit to the specialists we narrowed down to a treatment to finally try.
This week I'll be getting his new prescription filled which will hopefully help manage his ADHD. (In the meantime, this nasty humidity is helping...)
Tuesday, May 22, 2012
two number twos!
One time last week and once so far this week, Hayden was sitting on the toilet at school and didn't want to get up after he finished peeing.
Both times, he ended up going number two! He knew, and he waited. So awesome.
Most days the mornings go very well and every time he sits on the toilet, he pees. So (a) he is holding it until he's in the bathroom, and (b) most days he is having fewer accidents. The afternoons are a little bit trickier, because for some reason his bathroom schedule is slightly more predictable in the morning. He is doing fantastic though.
The only major hiccup at this stage, is that he does not comply well outside of school. In two weeks we are having a home consultation with the behaviorist, and I hope that we develop a successful plan to carry over.
Both times, he ended up going number two! He knew, and he waited. So awesome.
Most days the mornings go very well and every time he sits on the toilet, he pees. So (a) he is holding it until he's in the bathroom, and (b) most days he is having fewer accidents. The afternoons are a little bit trickier, because for some reason his bathroom schedule is slightly more predictable in the morning. He is doing fantastic though.
The only major hiccup at this stage, is that he does not comply well outside of school. In two weeks we are having a home consultation with the behaviorist, and I hope that we develop a successful plan to carry over.
Friday, May 11, 2012
he held it in!
Yesterday morning at school H did not have any accidents :)
Then, when they sat him on the toilet before lunch, he peed A LOT!
He earned a goodie bag from mom and dad with a box truck, a couple of his favorite snacks, and a coloring book with a potty chart & stickers.
He is a most-appreciative kid when he receives gifts, and he insisted on keeping his new truck in his pocket today.
I hope it's a lucky charm of sorts for more toileting success!
Every time I think I can't possibly be any more proud of him, something always happens that I am.
Then, when they sat him on the toilet before lunch, he peed A LOT!
He earned a goodie bag from mom and dad with a box truck, a couple of his favorite snacks, and a coloring book with a potty chart & stickers.
He is a most-appreciative kid when he receives gifts, and he insisted on keeping his new truck in his pocket today.
I hope it's a lucky charm of sorts for more toileting success!
Every time I think I can't possibly be any more proud of him, something always happens that I am.
Saturday, May 5, 2012
three hundred and thirty something days ago...
Yes, just shy of one year ago I started this blog. To track toileting progress. And although we felt like we got somewhere even on Day One, ultimately we were nowhere close.
Three hundred and thirty something days of encouraging moments, and not-so-encouraging moments.
Fast forward to May 3, 2012:
After a couple of hours into the school day, and Hayden still did not have a toileting accident, they decided to have him sit for a little longer than the usual couple of minutes because they knew he would have to go soon.
And THAT he did! After about ten minutes he looked down and he saw himself going, and he was so excited he clapped!
We celebrated Hayden-style:
1. he was showered with praises, and notes, and goodies, and treats at school
2. his dad took him to DD when he got home
3. his mom gave him bucks after work
4. he got a Cars battleship
5. he had pizza dinner with Grandma Suzi and Pop Z
6. he picked out another car after dinner, as well as a pickup truck with a jet ski on its trailer. And MORE bucks from Pop Z
7. Grandma Angie made her meatballs, from scratch (his favorite)
And the next day, he even told his Aide it was time to go back to the toilet AS HIS pants were wet :) So he knew, and he associated it with the toilet. (I'm combusting over this)
So we continued...
8. two new t-shirts (one of which appropriately says, "my time will come" ;'-) He is absolutely going to achieve this. He does everything when he's ready, and not before)
9. a new bath toy
10. last but not least, a couple of new water bottles & a baseball snack sack for school
For Hayden to learn toileting surrounding all of the challenges that fragile x puts in his way, it's like someone trying to teach me calculus when I could barely get a handle on algebra.
He is a soldier, our Hayden. He is a SOLDIER.
Three hundred and thirty something days of encouraging moments, and not-so-encouraging moments.
Fast forward to May 3, 2012:
After a couple of hours into the school day, and Hayden still did not have a toileting accident, they decided to have him sit for a little longer than the usual couple of minutes because they knew he would have to go soon.
And THAT he did! After about ten minutes he looked down and he saw himself going, and he was so excited he clapped!
We celebrated Hayden-style:
1. he was showered with praises, and notes, and goodies, and treats at school
2. his dad took him to DD when he got home
3. his mom gave him bucks after work
4. he got a Cars battleship
5. he had pizza dinner with Grandma Suzi and Pop Z
6. he picked out another car after dinner, as well as a pickup truck with a jet ski on its trailer. And MORE bucks from Pop Z
7. Grandma Angie made her meatballs, from scratch (his favorite)
And the next day, he even told his Aide it was time to go back to the toilet AS HIS pants were wet :) So he knew, and he associated it with the toilet. (I'm combusting over this)
So we continued...
8. two new t-shirts (one of which appropriately says, "my time will come" ;'-) He is absolutely going to achieve this. He does everything when he's ready, and not before)
9. a new bath toy
10. last but not least, a couple of new water bottles & a baseball snack sack for school
For Hayden to learn toileting surrounding all of the challenges that fragile x puts in his way, it's like someone trying to teach me calculus when I could barely get a handle on algebra.
He is a soldier, our Hayden. He is a SOLDIER.
Subscribe to:
Posts (Atom)