This Is Forty.

It’s time.

I’ve climbed to the top of the hill – and now all I can see is the downhill ride.

Melodramatic, no?

Though I harbor some feelings of sadness and resentment.

Yes, I know forty is no big deal, technically. Lots of time left. Lots of memories to make and treasures to cherish. And many people don’t believe me when I say I’m forty. But I feel it. I can’t help but feel…stuck. Stuck in a pile of mud between my son’s diagnoses and my own.

#BirthdaySelfie #OverTheHill

#BirthdaySelfie #OverTheHill

Today I took B back to his old developmental pediatrician. Dr. P used to be at Children’s but then went into private practice (with the hated word: self-pay). But now, she accepts our insurance and got us in in relatively quick turnaround. We had a very tiring yet productive appointment. A lot has changed since she had seen him – some good and some not so great. All I know is that B showed his “true colors” at the appointment, which is a good thing, since there are days that no one believes me at some of the things he does.

Such as: flopping on the floor, holding bad posture, continuously debating over simple requests, inattention to simple detail. You know the basic ADHD nightmare.

Also this will help with (finally) getting him on the DD Waiver list for the Commonwealth. As you know, we were denied the EDCD Waiver, so this is the only other step. Any documentation will help with our paperwork.

After his appointment I had to go to my endocrinologist. I have struggled with a hypothyroid condition, which got worse over the past few months. I have been tweaking my own routines, but to limited success. While my levels are better, I don’t FEEL better. I still feel sluggish, tired, and downright cold.  And old. :)

So, that’s how I started my fourth decade. A sick day off from work for two appointments, then to attend to B since we are stuck in (yet) another snow day from school.

Wooooooopppeeeee! Have some cake on me!

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Is It Spring Yet?

We’ve made it into the middle of February, and my patience for winter has worn thin.

At least we actually have snow today, albeit maybe 4 inches, tops. This is enough to close the Federal Government, to the amusement of many people (including my former Pennsylvanian self). Regardless, today means it’s a telework day for me, Husband is off, and I have two kids bouncing around the already bounced out house.  Did I mention that yesterday both were home due to the President’s Day holiday?

Anyway.

We had just had (finally) two straight, FULL, weeks of school. B has discovered that he is extremely skilled at debating, which means even more arguing about schoolwork, or something as simple as getting dressed. It’s been a battle over every little thing, and it’s beyond tiring.

What’s saved us is that B was selected into a new after-school activity. A special “club” that works one of the biggest challenges those on the autism spectrum face – social skills development. And so “Marvin’s Club” has landed at his elementary school, one of only seven in the county school system.

What’s Marvin’s Club? Well, it’s a program that has grown out of a local nonprofit, Developmental Connections. It’s a small group that expands on social skills utilizing the Social Thinking® curriculum. It first started at one elementary school in 2012 and has been in great demand for those that need extra guidance.  It meets once a week after school, and I’m beyond thankful that he was selected.

And so far, he likes it. As to how it translates at home – it’s hard to say. Also hard to say that they only have had two meetings (two of them were already canceled due to snow). But he enjoys it – as paraphrased by a staff member “I WISH I HAD IT EVERY DAY!”so hopefully it works out for us.

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Denied.

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I had a feeling.

Yesterday I followed up with the social worker for the county. True to form, B did not meet the requirements for the EDCD Waiver.

As I suspected, it was mostly based on not being able to document an on-going medical/nursing need. I mean, I provided all the medical stuff to them – but clearly he was “not disabled” enough. Never mind all the other physical/cognitive difficulties.

Yeah, this is why people get discouraged about getting services.

Anyway, back to the DD Waiver list I go. Left a message with that person and we’ll go from there.

I am blessed that we manage on our own, that we have our own insurance, and he gets services from his IEP. I know that. I just wish he can get everything that he is entitled to.

Too many people, too little coin to spread around.

 

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Thank You, Governor.

#FreeNeli. Remember?

After years (literally) of media coverage, a wonderful thing happened yesterday.

Governor McAuliffe signed a conditional pardon for Reginald (Neli) Latson. Neli will be transferred to a facility in Florida.

Capture

For those that petitioned, posted, and retweeted online – thank you. It shows that people are paying attention.

Governor, thank you for being able to see that this was a man that has special needs that cannot be addressed in general prison.  You listened to your constituents in the Commonwealth.

Even better – you did it from your hospital bed. Well done. Hope you recover quickly.

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