Sparks and Butterflies...

But aside from that, she's still completely normal

Wild Wonders of the Momma Bear

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I hate the fact that I have to be a momma bear. But hey, what can I say? If I don’t advocate for my kids – who will?

Joseph is on something through the state called AB3632. What that basically means is that the state recognizes that my kid needs more help than an IEP can give him, and so the state pays for his therapy (a certain amount of hours). A lot goes into the decisions as to what’s in the programs. What I mean by that is, it’s not rubber-stamped.

Every other year a social worker and Psychologist come in and have meetings with Joseph and us to determine if he still qualifies. They will also meet with his teachers, psychiatrist, and therapists, all separately. So far, they’ve never denied him the program. Then, every six months or so, his teachers, his therapists, the principal, and the lead of the special school he’s in meet with us and we hack through his IEP. Everything from his education, his testing, how he’s doing, goals – progress and new ones, down to specifically how many hours a month he needs in therapy. I used to just HATE those meetings, but that’s changed since we switched to the new school. Instead of feeling like I have to fight for crumbs, me against them, I actually feel like a member of the team. And then of course, conferences and meetings as needed. If stuff comes up for him that puts him in crises, that usually falls under the therapists. We’ve had several crises moments, and his therapists were there for us and him on the phone on a weekend.

These are things he needs. Our goal is for him to be able to be an able bodied, independent adult, who can hold a job and live on his own.

Well, now, it turns out that his therapy center might not have AB3632 funding any more after the first of the year. You can imagine the conversations I’ve been having. Serious.Momma.Bear. Especially when the therapy center decided to just stop anyway – you know, since we probably won’t have any funding later. Seeya.

Excuse me?

Yeah. No. You don’t get to slough us off without creating a plan with us, and assisting us with finding the people who DO have the funding. My son is on prescription meds someone at YOUR center prescribes. Your center provides HALF of his therapy hours that everyone agrees he needs. You don’t get to make us go away ’cause it’s more convenient while you wait to see what the state does with the program. Because you still DO have funding.

Ahem. He still has his therapy. He still has his Psych. (meds). It just took 3 separate intense conversations with the supervisor at the center during which I made her realize I don’t do what others tell me to, and I don’t go away because it’s convenient for them. I also don’t play well with others.

I understand the funding issues. We have to wait on the state for that. You just don’t throw the literal baby (MY BABY) out with the bathwater. He’s not a “case,” “Case Number,” or “statistic.” He’s Joseph. He has a mother named Michele. And she will damn well make sure you know it.

A gig – Want to read?

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As you all know…  I have a business, Vineyard Virtual Services.  I am a Virtual Assistant who caters to freelance writers and small business owners.  As part of that, I also freelance write/ghostwrite.  I usually can’t share that stuff, as it’s not my own byline.

However, at one of my gigs, I’m a one of the writers on the company blog.  I write as MicheleW, so the owner said she was happy for me to promote posts when they happen.  I’ve been writing there a few months now.

Fun and Function is a special needs resource company.  I would say they are more geared towards the Autism spectrum and Sensory Processing Disorder, but there’s something for everyone if your child has special needs.  I write about various topics in the blog from the perspective of being a parent of kids with special needs.

All this to say that there’s a new post over there!

Help from my Friends

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I know several of my online and offline friends deal with kids who have special needs.  I’m one of them.  I’m writing an article for one of my clients, and I would love to hear your stories on the fiscal impact it’s made on your family.  State paid?  Medical Insurance?  District paid?  Out of pocket?  Private care?  I’m looking for the myriad of routes you’ve taken financially to provide special needs care to your child.  Comment or email.  Thanks!

Thursday

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I’m going to try to explain what happened in small doses, because I am short on time, and because I’m short on spirit.

For those who might not read regularly, Joseph has mental and emotional/behavioral issues, as well as specific learning disabilities.  As a result, he is on medication to help regulate his emotional control (a very mild form, as we recognized the need, but needed to balance it with our genuine concern for long term effect data shortage.)  He is on an IEP at school which includes special education, regular class, and counseling.  He has outside mental health care as well.  He’s been having serious trouble with another child at the school who has known him for years, and know all his buttons and triggers, and has no compunction in using this knowledge.

The school is aware of everything – including this other child.

On Thursday, we got a call around 1pm.  The school was asking us to come down, as they couldn’t find Joseph, and felt that he might have possibly gone off campus.  I stayed home, and Poe went to handle it.  He has before.  Joseph has run before.  One of his issues was using violence against those he was angry or upset with.  After years, he now understands that’s wrong.  Instead, he runs.  It’s his natural fight or flight response on overdrive.  In the past, he’s stayed close to the school.  Poe got there and called me to say that the school didn’t know where he was.  They asked us whether we wanted them to call the police.

You’ve lost our son, and you ask us if we want you to call the police?  Yes.  He’s 9 and needs to be found.  They locked down the school until he was found.  One mom was in the office, complaining to the secretary about how it was really inconvenient, and she took time off work for her meeting, and blah blah blah.  My husband was standing right there, and told her, “I’m so very sorry that my son’s disappearance has inconvenienced you ma’am.”  She just gave him a dirty look.

What led to this?  I found out later that this other child has been “stealing” Joseph’s friends (again) and sending glares Joseph’s way.  Well, it got to be one glare too many and he ran.  What the school failed to tell us at the time – he had an aide with him, who failed to attempt to follow him.

Thus started an hour’s nightmare of the police crawling over our town trying to find him, them coming to the house (I stayed home in case Joseph called us,) giving them his most recent photos, etc.  I explained that he has issues, briefly, but serious, and that no one at the school seemed to be aware of any particular incident that day.  Then came that interminable wait.  Waiting is awful.

Eventually we got the call that Joseph had been found.  And here’s the kicker that starts it all.  He was found on the effing freeway.  He had walked all the way from school – PAST our house – and onto the freeway on ramp a block away.  He was trying to get to the mountains to run away, and that was the route he knows.  When he’s in his heightened state, he has no way of thinking through actions/reactions/consequences.  He put himself and other drivers in danger, true.  However, even though I was available, and police knew this, the police sergeant on the case decided without speaking to me about his history to put him under an involuntary 72 hour hold, because he was obviously (in his mind) trying to kill himself.

If he had talked to me first, he may have realized that putting a 9 year old in a mental institution could possibly be detrimental to him, and that he has therapists on call willing to come to him to help him through this mental crisis.  He didn’t.  Once he signed the order, too, it was out of everyone’s hands.  They wouldn’t let me see him at the freeway, just told me to leave and go to the hospital.  I ran home, got his medical information, my ID, etc, and headed to the hospital.  On the way I called his psychiatrist and his therapist and put them on the alert.

When I got there I found my 9 year old son handcuffed to a hospital bed, purple with fury, and stiff as a board.  As soon as he saw me, he started to cry, his joints loosened, his color started coming back down to normal.  After a few minutes, they saw my effect on him and removed the handcuffs.  They threatened him with restraints, but he didn’t understand – although I did.  I briefly saw his shoulder.  The fire department personnel physically removed him from the side of the freeway, and he was all banged up.  Apparently he socked one of the firefighters who was hauling him.  The police wanted him charged with assault.

The doctor spoke briefly too us, but really, he didn’t do anything.  They took his vitals, but that’s it.  He never got psych care there.  Their role was to take custody of us, and for the hospital’s social worker to find a mental institution that takes pediatric patients.  It took a couple of hours, but they found one.  I was informed that I would be arrested if I tried to leave with him.  At some point, Poe came and relieved me, and I went home to Logan to eat something and just take a break.  You see, the judgment and stares you get when there’s mental issues involved feels heavy.  I had to handle the bulk as my parents were on vacation (but were on their way back as soon as they heard) and Logan needed to be cared for.  Joseph’s behavior was completely calm in ER for the many hours we were there.  At the mental institution it would be several more hours until a bed was available.  At 10pm an ambulance was sent for him.  I wasn’t allowed to take him myself.  I followed the ambulance to the mental institution 15 miles away.  (We would continue to drive 30 miles a day every day for this.)  It took them 3 more hours to get him checked in, due to a  shift change.  I got home around 1:30am.  He didn’t get to bed until about 2:30am (and then awoken at the normal wake up time at 6am Friday.)  He was exhausted.  Just exhausted.  His normal bedtime is 9pm.  It was all just so disjointed.  I kept wanting to say, “but he’s a kid.”  “It’s past his bedtime.”  “He hasn’t had his bath.”  I mean underneath all of the crap – he was thrilled to ride in a real ambulance.  He’s a child.  It was such a grown up situation, and he looked so very small.  So very tired.  Trying to keep brave, as he couldn’t remember everything, but knew he caused this.

When I got home, because I wasn’t allowed to stay, my husband tried to hug me, but I wouldn’t let him.  I had held it together for 12 hours, but I needed to tell him the important stuff first.  I had to tell him that the 72 hours would be up at 2:25pm on Sunday afternoon.  That we would be called tomorrow about his care, and for them to get his history.  That we could visit 5:30-7pm nightly, but that’s all we could see him.

Then we went to bed.  And I lost it.  Totally, completely, thoroughly.  It wasn’t pretty.

I asked Poe what kind of mother leaves her child at a mental institution (as if I had a choice?)  He said, “The kind who’s kid plays on freeways.”  Gallows humor.  Gallows humor certainly got us through this week.

That afternoon and night was surreal.  Strange.  Sort of seen like it wasn’t really us – like I was watching a play or something.

To be contined.

Don’t Rattle a Mama Bear’s Cage

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Rather than go through the whole spiel, I’m going to copy an email with identifiers edited. Suffice it to say that we have been dealing with this issue for MONTHS. In those months, poor Joseph has been going downhill. And it might not have been necessary.

from: Michele {email}
to Dr. Therapist {email}
cc Poe {email}, Dr. District
date Thu, Jun 11, 2009 at 11:49 AM
subject Regarding Joseph {last name}

Hi Dr. Therapist,

Please feel free to forward this email to any administrative personnel who handle such things. I’ve also CC’d my husband and Dr. District with our school district.

I write, in all honesty, with some frustration. Skipping details, the point is that everyone involved in Joseph’s case felt that consulting with a psychiatrist, and investigating if medication for anxiety (or anything else) might be appropriate at this stage for Joseph. When the subject was broached, in was basically shut down by {Big Therapy Center}, because it wasn’t part of his plan. So Dr. District went ahead and requested that his {State Treatment Plan} be officially evaluated to add this to his program.

Today, we met with Dr. Big State. She was his initial evaluator in 2007. We went through his case updating it from 2007. She was confused as to why she called upon to do this. Why? Because psychiatric care and medication prescription is already a part of his plan.

{Big Therapy Center} has his {State Treatment Plan} plan. Twice actually, once when he initially started treatment there, and I sent another copy when it was somehow lost. You’ll see his recommendations on pages 7 and 8.

“The Department of Mental Health finds that Joseph {last name} qualifies for mental health services under {State Treatment Plan}. {Various treatment recommendations redacted.} , medication evaluation and follow-up by a psychiatrist if medications are prescribed.”

Dr. Big State is going to write an addendum and say the exact same thing. “Yep, you’re qualified… and already were.” She went further on to say that this is the standard wording, and is ALWAYS included, unless the individual does not qualify for {State Treatment Plan} in the first place.

So. When can we make an appointment with the psychiatrist?

–Michele
Mother of Joseph {last name}

My anger is frothing.

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