Clouds, May 2010

Clouds, May 2010

Wednesday, June 27, 2012

the daily grind

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.

Sunday, June 24, 2012


This is a before and after of H's haircut :)

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.